Wednesday, May 2, 2012

Innovative Clinical Trial Aimed at Curing Rare Pediatric Brain Tumor Treats First Patient



May 1, 2012—New York, NY—Doctors at Memorial Sloan Kettering Cancer Center and Weill Cornell Medical Center took a major step towards finding a cure for inoperable pediatric brain stem tumor Diffuse Intrinsic Pontine Glioma (DIPG) on Tuesday, May 1, 2012 as work began on the first patient in a pioneering clinical trial spearheaded by Dr. Mark Souweidane. Through the innovative use of convection-enhanced delivery (CED), Dr. Souweidane’s clinical trials will be the first of its kind to administer radio immunotherapy to children with an otherwise incurable tumor.
Denise Pflaumer Downing is the patient’s mother and a Facebook follower of The Cristian Rivera Foundation. She expressed her gratitude for the efforts of the Foundation when she sent this message: “I am sitting at MSKCC in NYC. Right now, my 4 year old daughter is in surgery with Dr Mark Souweidane and his team as they perform the first surgery in a new clinical trial on my daughter. I am so thankful to your foundation for all you have done to support this research and make this trial possible. We must find a cure for DIPG, not only for my child but for all children. Thank you Cristian Rivera Foundation!”
Another sentiment soon followed, this time from Dr. Souwedaine himself.“Today, the first day of Brain Tumor Awareness month, we treated our first patient on our trial using local delivery of a radioimmunotherpeutic agent. The beautiful 4-year-old girl did fantastic and tolerated her surgery like a true champion. Today marks a day of hope for her family, an entry into a new treatment approach for these children, and the culmination of over 12 years of translational research.”
Through this groundbreaking work, Dr. Souweidane and his team aim to ultimately save the lives of approximately 200-300 children who are diagnosed with DIPG each year in the United States. DIPG is typically found in children between the ages of 1 and 9, who are given a bleak prognosis after the tumor is discovered. Median survival is less than one year and the two-year survival rate is less than 20 percent. Currently, there are no recorded survivors and all children diagnosed with the disease typically pass away within 3-18 months.
Helping make these landmark trials possible were donations from top cancer charities with the common goal of making DIPG a thing of the past, including New York City-based  not-for-profit 501(c)(3) The Cristian Rivera Foundation, which, to date, has donated approximately $150,000 to Dr. Souweidane’s promising research. John “Gungie” Rivera started the foundation in 2009, months after his 6-year-old son Cristian lost a more than two-year battle with the disease. The Cristian Rivera Foundation is committed to supporting DIPG families and finding a cure for DIPG through education and program funding.
“When my son Cristian was first diagnosed with DIPG, it seemed very unlikely, in fact almost impossible, that a cure would be found in my lifetime,” said Rivera. “Thanks to the amazing courage and interminable spirit of Dr. Souweidane and everyone at the Weill Cornell Pediatric Brain and Spine Center, I firmly believe a cure is within our grasp. Dr. Souweidane gives the DIPG community the hope they so desperately need and I am proud to give him the full support of the Cristian Rivera Foundation as he works toward a cure.”

Monthly Newsletter April 2012


Welcome to the Cristian Rivera Foundation April Newsletter

Last month brought great things and we’re sure this one will too. Thursday March 22nd was the charity performance of DC-7: The Roberto Clemente Story at the Puerto Rican Traveling Theatre. Guests were greeted by a red carpet and a host of photographers before entering the cocktail reception with wine and hors d’oeuvres provided by Babalu Restaurant in the Bronx and its Executive Chef, Cristian Rivera Foundation Committee Member Alex Garcia. Roberto Clemente Jr., the newest Cristian Rivera Foundation committee member, was happy to meet and speak with his fellow committee members, guests and, of course, Dr. Mark Souwedaine. After posing for photos and speaking with a wide range of people, Dr. Souwedaine took the stage and thanked everyone for contributing to his research and announced that his newly-approved clinical trial will be under way and that he should be operating on the first patient in the next month. When the applause for this wonderful news subsided, he was handed a $10,000 check raised by tickets and donations leading up to the event.


The Cristian Rivera Foundation would like to give a special thank you to everyone who made a donation or attended this event, especially the Cristian Rivera Foundation committee members who joined us that night, including founder of the Puerto Rican Traveling Theatre Miriam Colon, businessman Elis Pacheco, founder and president of Metropolitan Recording Corporation Jerry Salerno, DJ Tedsmooth, music producer Aldo Marin, Red Entertainment Group founder Carlos Keyes, businessman Jeff Lavino, David Letterman Show staffer Karen Cerna, real estate agent Fulvia Lora, Bronx Base Builders founder William Padilla, Information Technology manager Steve Cox, X-Interactive Media founder Carlos Colon, philanthropist Dolores Catania, and concert impresario Ralph Mercado III, a member of the Cristian Rivera Foundation Board of Directors. Danielle Staub of The Real Houswives of New Jersey even stopped by to greet everyone and smile for pictures. All of your generosity is greatly appreciated. Also, a host of photos were taken before the play began and a few in between. You can see the photos at http://www.cristianriverafoundation.org/crfdc7/index.html.

While you’re there, you can view the latest news on The Cristian Rivera Foundation and the DIPG community. We also feature tributes to DIPG angels on their birthdays and the anniversary of the day they earned their wings. If you’d like to share your angel’s story, just contact us with info and photos or a personal website, and we will be happy to include them on our page.

We also highlight these posts on our Facebook http://www.facebook.com/cristianriverafoundation and Twitter https://twitter.com/#!/TweetCRF pages, where we are connected to DIPG families all over the world. Weill Cornell Medical Center also has a Facebook page http://www.facebook.com/WeillCornellPediatricBrainandSpine?ref=ts just for the Brain and Spine Center where you can follow Dr. Souwedaine’s progress as he works to cure DIPG.

"Like" us on Facebook to stay up-to-date on upcoming events we have planned that are sure to be sweet. We've got an event coming up at the Zylo restaurant in Hoboken's W Hotel in June organized by Cristian Rivera Foundation committee member Andy Epstein to raise funds for The Cristian Rivera Foundation. It is great to see committee members coming together to do their part to make the Cristian Rivera Foundation the amazing organization that it is. Be sure to follow us on Facebook and Twitter and check our website for updates on other exciting events to come!

As we ready ourselves for Brain Tumor Awareness Month in May, we’d like to take a moment to remind everyone to wear a gray ribbon to raise awareness during the month. This is a tribute to all of the individuals suffering from brain tumors of all types, including DIPG, as well as their families. Don’t forget that wristbands, wooden beaded bracelets and t-shirts are all available online at http://www.cristianriverafoundation.org/shop.html and proceeds go entirely to The Cristian Rivera Foundation which, in turn go to Dr. Souwedaine. Since DIPG is such a rare condition, funding for research has been especially hard to achieve, but we won’t stop until we’ve cured DIPG.


Full Steam Ahead!

Sincerely, “Cristian’s Mommy” Jenelle Asencio, John “Gungie” Rivera “Forever Cristian’s Daddy,” and all of the members of the Cristian Rivera Foundation Committee: Aldo Marin, Alex Garcia, Andy Epstein, Anthony Mason, Camilo, Carlos Colon, Carlos Keyes, Dr. Bear Walker, Dr. Ben Velazquez, Carlos R. Colon, Dolores Catania, Doug E. Fresh, Edward Caban, Elis Pacheco, Fernando Ferrer, Fulvia Lora, Funkmaster Flex, Hamlet Peralta, Jay Hernandez, Jeff Lavino, Jerry Chaparro, Jerry Salerno, J.I. Starr, Jim Jones, John “Jelly Bean” Benitez, Johnny Nuñez, Jose Alberto “El Canario,” Joseph Mbeh, Kamar De Los Reyes, Karen Cerna, Katie DeFlorio, Kenan Thompson, Khaliah Ali, Little Louie Vega, Luis Guzman, Manuel Alejandro Ruiz (Boy Wonder), Mark Rosner, Matthew “Mateo” Rajkumar, Melissa Chung, Miriam Colon, Murray Richman, Odalys Molina, Pablo Diaz, Ralph Mercado III, Ramon E. Javier, Ray Wong, Ricardo Cardona, Rickie Ricardo, Robert Vazquez, Roberto Clemente Jr., Ruben Sierra, Solange Osorio, Steve Cox, Tedsmooth, Tony Ferrara, Victor Martinez, Vito Bruno, William Padilla and William Pla.

Friday, March 30, 2012

FOR EVERY $25 DONATED TO THE CRISTIAN RIVERA FOUNDATION RECEIVE A FREE TICKET TO SEE VICTOR MANUELLE PERFORM LIVE


 

EVENT: Victor Manuelle's Single Release Party

VENUE: LQ (Latin Quarter)

DATE: Wednesday, April 4, 2012

TIME: 5:00 PM

FOR EVERY $25 DONATED TO
THE CRISTIAN RIVERA FOUNDATION RECEIVE

A FREE TICKET TO SEE
VICTOR MANUELLE PERFORM LIVE!

(Donate $25 Get 1 Ticket, Donate $50 Get 2 Tickets, Donate $75 Get 3 Tickets, etc.)
Offer Expires Tues 4/3/12 - Free Admission with Ticket Only - Tickets Must Be Picked Up at our Office
Monday 4/2 or Tuesday 4/3 from 12 Noon - 7PM - 40 W 37th Street, Suite 402, NYC 10018
Please Bring Your Paypal Receipt and Valid Form of ID When Picking Up Your Ticket - 21 & Over






DETAILS: Head to LQ on Wednesdays for Midtown's top after-work party featuring the best in Latin music performed live on stage. Doors open at 5pm with 2-for-1 drinks until 7pm and $6 sangria all night to go with the free dinner buffet. Free salsa dance lessons from 8pm-9pm. Hot Latin Wednesdays takes place this and every Wednesday at LQ.

$6 Sangrias All Night!

2 For 1 Drinks 5 PM - 7 PM
Free Dinner Buffet
Free Dance Lessons 8 pm - 9 pm


ADDRESS:
511 Lexington Avenue
(Btwn 47 & 48 Street) New York, NY




View Larger Map

Remembering Delaney Starcher

CRF Committee Memembers Give Dr Souweidane Check
Happy 8th birthday to DIPG angel, Delaney Starcher born April 1st, 2004. "Laney Bug" was diagnosed on October 9th, 2008 at just over 4 years old and about a year later on December 1st, 2009 this little angel earned her wings. She won her battle and found her place in heaven, where she watches over her mom and step-dad, sisters and brother. Delaney was the uplifting spirit to all around her and we're sure that will never change. Happy birthday, angel.

Remembering Isaiah Ryan Garza

CRF Committee Memembers Give Dr Souweidane CheckIsaiah was a strong spirit that surrounded him with friends. He loved for others to be happy and wanted to make a difference in the world. We applaud his strong will to do so. Born on July 21st, 1992, Isaiah was 12 years old when he was diagnosed with DIPG and it was two years later, April 1st, 2006 that he became an angel. Our thoughts reach out to Isaiah’s family on this day. You will never be forgotten, Isaiah. We’re sure you’re doing wonderful things in heaven. Keep watching over and rest peacefully.

Friday, March 23, 2012

The Cristian Rivera Foundation Raises $10,000 with Successful Theater Event

CRF Committee Memembers Give Dr Souweidane Check
The Cristian Rivera Foundation hosted a successful charity performance of award-winning bilingual musical DC-7, The Roberto Clemente Story on Thursday, March 22. The event, which included a two-hour red carpet event catered by Celebrity Chef and Cristian Rivera Foundation Committee Member Alex Garcia, the executive chef at Babalu Restaurant and Lounge in the Bronx, raised $10,000 toward Dr. Mark Souweidane's pioneering clinical trials aimed at finding a cure for DIPG. Dr. Souweidane attended the performance and as he accepted the check live on stage from Cristian Rivera Foundation founder John "Gungie" Rivera and all of the committee members in attendance, he announced that his team is within weeks of treating the first patient. Among the night's high-profile attendees were The Real Housewives of New Jersey star Danielle Staub and Cristian Rivera Foundation Committee Members sportscaster and humanitarian Roberto Clemente Jr., founder of the Puerto Rican Traveling Theatre Miriam Colon, businessman Elis Pacheco, founder and president of Metropolitan Recording Corporation Jerry Salerno, DJ Tedsmooth, music producer Aldo Marin, Red Entertainment Group founder Carlos Keyes, businessman Jeff Lavino, David Letterman Show staffer Karen Cerna, real estate agent Fulvia Lora, Bronx Base Builders founder William Padilla, information technology manager Steve Cox, X-Interactive Media founder Carlos Colon, philanthropist Dolores Catania, and concert impresario Ralph Mercado III, a member of the Cristian Rivera Foundation Board of Directors.

Tuesday, March 13, 2012

Bilingual Musical to Host Charity Performance Benefiting the Cristian Rivera Foundation

On Thursday, March 22, DC-7 The Roberto Clemente Story will be hosting a special charity performance to benefit The Cristian Rivera Foundation. Cristian Rivera Foundation Founder John "Gungie" Rivera and Cristian Rivera Foundation Committee Members Ralph Mercado III and Miriam Colon are associate producers of the play, which is produced by Teatro SEA's Manuel Moran.

The play stars Modesto Lacen as Roberto Clemente, the first Hispanic ever inducted into the Baseball Hall of Fame. Clemente was not only a baseball MVP but also a humanitarian and civil rights activist who died 40 years ago when his plane crashed on the way to helping earthquake victims in Nicaragua. Two of Clemente's sons have raved about Lacen's award-winning performance, as well as the entire production, which won six ACE awards including Best Musical.

"For this generation who never got to know my father, Modesto Lacen does a great job portraying him," said Luis Roberto Clemente. "He resembles him a lot and with his singing especially, he gives an amazing performance." Older brother Roberto Clemente Jr. added, "I have seen the show five times now and the whole cast does a wonderful job, but especially Modesto Lacen. I believe that he has truly transformed into my father, no doubt about it."

Tickets for this special performance are $67.50 and can be purchased by calling 212-779-2222 or by visiting http://cristianriverafoundation.org/events.html. The performance begins at 8pm and will be preceded by red carpet arrivals and a cocktail reception from 6pm to 8pm with complimentary wine and hors d'oeuvres provided by Cristian Rivera Foundation Committee Member and Celebrity Chef Alex Garcia and Babalu Restaurant and Lounge in the Bronx. 

Monday, March 12, 2012

Collaborating to Cure DIPG

Collaborating to Cure DIPG
DIPG Dad Juan Manuel Viu flew to the U.S. from Spain once again to meet with fellow DIPG Dad, John “Gungie” Rivera at The Cristian Rivera Foundation offices in New York last night. Dr. Jaume Mora, of Spain’s Hospital Sant Joan de Deu flew into Boston earlier in the week to speak with Dr. Mark Kieran of the Boston Children’s Hospital and Dana Farber Cancer Institute. The next stop on his trip included a meeting in New York with Dr. Mark Souweidane of Wiell Cornell and Memorial Sloan-Kettering Cancer Center. After speaking with both doctors about recent advancement in DIPG research plans, Dr. Mora met with John “Gungie” Rivera and Juan Manuel Viu at the CRF offices. From there, they enjoyed dinner at Babalu Restaurant in the Bronx to discuss upcoming collaboration to cure DIPG.

Saturday, March 10, 2012

Remembering Ralph Mercado



On Sunday, January 25th 2009, I lost my son Cristian to Pontine Glioma, a rare form of brain cancer that has no cure. On Tuesday, March 10th, 2009 I experienced another painful loss. I lost my partner, my mentor, my friend, my brother and my second father: Ralph Mercado. He was the only person in my life who could truly wear all those different hats. Ralph was more than an inspiration. He made an immeasurable impact when he was alive, and has continued to do so long after he passed away.

Ralph was the reason I decided to pursue a career in the Latin entertainment business. He provided me with the inspiration I had been seeking. With Ralph, I co-produced seven successful years of tropical music concerts at Madison Square Garden. It was because of Ralph that I decided to open up my own music label, Prestigio Recordings/Sony Discos. He advised me against it, but I didn't listen. To date, it was the worst investment I have ever made. I should have listened. There were people who were scared of Ralph. They had this perception that he was this impenetrable force to be reckoned with. He was, but I also knew the other side of Ralph. I saw what others didn't. He was caring and he had a gentle soul. He would always call me to set up meetings for one reason or another, and most of the time we would just end up drinking wine and talking about life. We would never really cover any ground on what the meeting had initially been about, but it didn't matter. I enjoyed every minute of it and learned so much about love, life and business from our conversations. There was no better teacher I could have had than the self-made impresario of Latin music who I had the great privilege of calling my friend.

I can close my eyes and go back to December 2008 when Ralph had been released from the hospital for a short while. I remember going to visit him and his son Ralph Mercado III was so amazed at how his father reacted when he saw me. When Ralph saw me, he smiled and requested that I take off my coat. All he kept asking about was the baby (my son Cristian), who was in very bad condition at that time. That was the kind of man he was. Even while he was lying sick in bed, he would still think of others. He was the kind of man who always showed me love and inspired me every day. I am blessed and privileged to have had him in my life. That day, before I left, I kissed and embraced him. He was my family; my partner. Words cannot begin to describe the impact that he had on my life. I feel so happy that I was able to share that day with him and see him smile before he passed.

It has been three years since Ralph passed away and I can still remember it as if it were yesterday. I can still feel the pain that the news of losing such an important person in my life brought me. He is always in my thoughts and remains a part of everything I do as I continually try to pay tribute to him and keep his memory alive. I am honored to have his son Ralph Mercado III by my side today as both my partner and my friend. Together we will never stop working to fulfill the legacy his father left behind. It eases my pain a bit to know that my son is with someone I hold so close to my heart. I am sure Ralph is in Heaven discussing the production of Thomas the Train events with Cristian. I know their legacies will continue to live on here on Earth, in Heaven and in all of our hearts. 

Mesenchymal Transition and PDGFRA Amplification/Mutation Are Key Distinct Oncogenic Events in Pediatric Diffuse Intrinsic Pontine Gliomas

"Two distinct transcriptional subclasses of DIPG with specific genomic alterations can be defined at diagnosis by oligodendroglial differentiation or mesenchymal transition, respectively.....Patients in this later group had a significantly worse outcome with an hazard ratio for early deaths, ie before 10 months, 8 fold greater that the ones in the other. The worse outcome of patients with the oligodendroglial type of tumors was confirmed on a series of 55 paraffin-embedded biopsy samples at diagnosis (median overall survival of 7.73 versus 12.37 months."


Free Full Text- http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0030313
-----------------------------------
Mesenchymal Transition and PDGFRA Amplification/Mutation Are Key Distinct Oncogenic Events in Pediatric Diffuse Intrinsic Pontine Gliomas. PLoS One. 2012;7(2):e30313. Epub 2012 Feb 28.Puget S, Philippe C, Bax DA, Job B, Varlet P, Junier MP, Andreiuolo F, Carvalho D, Reis R, Guerrini-Rousseau L, Roujeau T, Dessen P, Richon C, Lazar V, Le Teuff G, Sainte-Rose C, Geoerger B, Vassal G, Jones C, Grill J.

Source
Department of Neurosurgery, Necker-Sick Children Hospital, University Paris V Descartes, Paris, France.

Abstract 
Diffuse intrinsic pontine glioma (DIPG) is one of the most frequent malignant pediatric brain tumor and its prognosis is universaly fatal. No significant improvement has been made in last thirty years over the standard treatment with radiotherapy. To address the paucity of understanding of DIPGs, we have carried out integrated molecular profiling of a large series of samples obtained with stereotactic biopsy at diagnosis. While chromosomal imbalances did not distinguish DIPG and supratentorial tumors on CGHarrays, gene expression profiling revealed clear differences between them, with brainstem gliomas resembling midline/thalamic tumours, indicating a closely-related origin. Two distinct subgroups of DIPG were identified. The first subgroup displayed mesenchymal and pro-angiogenic characteristics, with stem cell markers enrichment consistent with the possibility to grow tumor stem cells from these biopsies. The other subgroup displayed oligodendroglial features, and appeared largely driven by PDGFRA, in particular through amplification and/or novel missense mutations in the extracellular domain. Patients in this later group had a significantly worse outcome with an hazard ratio for early deaths, ie before 10 months, 8 fold greater that the ones in the other subgroup (p = 0.041, Cox regression model). The worse outcome of patients with the oligodendroglial type of tumors was confirmed on a series of 55 paraffin-embedded biopsy samples at diagnosis (median OS of 7.73 versus 12.37 months, p = 0.045, log-rank test). Two distinct transcriptional subclasses of DIPG with specific genomic alterations can be defined at diagnosis by oligodendroglial differentiation or mesenchymal transition, respectively. Classifying these tumors by signal transduction pathway activation and by mutation in pathway member genes may be particularily valuable for the development of targeted therapies. 

Friday, March 9, 2012

Fairfield Woman Cuts Hair to Raise Awareness for Disease, Honor Fallen Son

Randy Hill a barber at J's Barber Shop in Suisun City
shaves the words "Cure" and "DIPG" into the hair of
Danah Jewett of Fairfield on Thursday. Her son, Dylan,
died of the rare brain tumor in January of 2009, less
than two-months after he was diagnosed.
(Joel Rosenbaum/JRosenbaum@TheReporter.com
 
Weary of grieving, a young Fairfield mom who lost a son to brain stem cancer three years ago took a bold step Thursday in her journey toward healing -- she shaved her head. 

And embedded two important words on the newly buzzed canvas -- CURE DIPG. 

"As fun as all this is, it's really about the kids. Remembering Dylan and honoring the kids," emphasized Danah Jewett, 34, as she fingered her spiky new do compliments of Randy Hill at J's Barber Shop off Sunset Avenue in Suisun City. Touched by her cause, Hill donated his services. 

Jewett's son, 5-year-old Dylan, died of the rare and inoperable Diffuse Intrinsic Pontine Glioma (DIPG) in 2009 just two months after his diagnosis.

Randy Hill a barber at J's Barber Shop in Suisun City
shaves the words "Cure" and "DIPG" into the hair of
Danah Jewett of Fairfield on Thursday. Her son, Dylan,
died of the rare brain tumor in January of 2009, less than
 two-months after he was diagnosed.
(Joel Rosenbaum/JRosenbaum@TheReporter.com)
 
Weary of grieving, a young Fairfield mom who lost a son to brain stem cancer three years ago took a bold step Thursday in her journey toward healing -- she shaved her head. 

And embedded two important words on the newly buzzed canvas -- CURE DIPG. 

"As fun as all this is, it's really about the kids. Remembering Dylan and honoring the kids," emphasized Danah Jewett, 34, as she fingered her spiky new do compliments of Randy Hill at J's Barber Shop off Sunset Avenue in Suisun City. Touched by her cause, Hill donated his services. 

Jewett's son, 5-year-old Dylan, died of the rare and inoperable Diffuse Intrinsic Pontine Glioma (DIPG) in 2009 just two months after his diagnosis. 

Not much is known about the condition, so the family donated Dylan's brain tumor to Stanford University School of Medicine for further research. His cells were the first living specimen of DIPG in the world and resulted in significant discoveries, including the cell of origin. By understanding which cell causes the tumor, Jewett said, scientists can further understand the disease. 

Dylan's mom hopes to bring more awareness of the disease, as well as of the courageousness of all children who are living with cancer. 

"My job, as Dylan's mother, is to make sure his memory lives on, raise awareness about this deadly cancer and tell others about DIPG, and hope that funding will somehow become available," she said. "Children are dying and there is a way to make it stop." Still coming to terms with her own loss, Jewett sponsored the inaugural "Dylan's Warriors Prayer Walk" in Vacaville's Lagoon Valley Park last September. A sequel is planned for this September, complete with run/walk T-shirts and giveaways of gold and gray ribbons representing childhood cancer and brain cancer. Details will be revealed by June or July. 
In recent months, Jewett's heart has remained heavy. Her family, which includes husband John, who is stationed at Travis Air Force Base, and a son, 4-year-old Jayden, encouraged her to do more for herself. So she did, literally using her head as a tool. 

Visiting her hairstylist at "Twisted" in Fairfield, Jewett had her long brown locks separated into 56 braids. Friends and family donated $10 or more per braid for cancer research and, beginning on the anniversary of Dylan's death, she began cutting one braid each day. Meanwhile, she also communed with her faith, delved deep into herself and prayed for renewal. 


Randy Hill a barber at J's Barber Shop in Suisun City shaves the
words "Cure" and "DIPG" into the hair of Danah Jewett of
Fairfield on Thursday. Her son, Dylan, died of the rare brain
tumor in January of 2009, less than two-months after he was
diagnosed. (Joel Rosenbaum/JRosenbaum@TheReporter.com)
 
"I wanted to seek an intimate relationship with God, just think of God and Dylan, what Dylan meant to me," she explained. "I wanted a process for it, I wanted more than to shave it off and it's over." 

By having "CURE DIPG" nearly carved into her head, Jewett said there's no way that she won't generate notice for the condition. Her braids had already caused a mild sensation -- the new hairdo is likely to generate an explosion. 

"This year is about Dylan, remembering him, honoring him, about DIPG and what it stole from us," she said. "I want people to think about things, about kids with cancer. It's just so amazing, what they go through." 

Even children have asked about DIPG, Jewett said, recalling a 9-year-old girl at church who was so inspired by Jewett's hair that she gave her a $5 donation and pledged to do more to help. 

Thus far, Jewett has raised about $400 for Lucile Packard Children's Hospital for DIPG research and plans to donate her hair to Locks of Love, an organization that makes wigs for cancer patients. 

For more information, go online to 
www.curedipg5.com or www.facebook.com/curedipg. 

www.thereporter.com/rss/ci_20137032?source=rss

Thursday, March 8, 2012

Race Funds Cancer Research

By Anne Cloonan

The Fifth Annual Race For Grace will be held March 31 at Norwin High School. The race, which includes a five-kilometer run, five-kilometer walk and a one-mile walk, will benefit the Reflections Of Grace Foundation.

The race and the foundation it benefits are named for Grace Elizabeth Ekis, a 5-year-old who died on Valentine's Day 2008 after a 13-month battle with a rare brain tumor, according to the foundation's website, run by Brian and Tamara Ekis, Grace's parents.

The foundation provides financial, educational and emotional support to the families of children with brain cancer.

Grace's cancer was a diffuse intrinsic pontine glioma, or a tumor of the brainstem that has no known cure and for which no advances in treatment options have been made for more than 30 years, according to the website.

The website describes it as one of the worst forms of childhood brain cancer. Approximately 150 to 200 children are diagnosed with this type of tumor each year, and survival time is typically nine to 12 months.

In 2011, the race had 1,800 registered runners and walkers, 300 volunteers and 300 spectators, and raised more than $88,000 for the families of children with brain cancer.

That was an increase in funds raised from 2010, when 2,000 attended and more than $70,000 was raised for the families of children with brain cancer.

Opening activities for the 2012 race will begin at 7 a.m. March 31, and the race itself will start at 9 a.m. at the high school at 251 McMahon Drive, North Huntingdon.

Registration fees will be $25 for adults and $20 for children age 12 and younger. A waiver must be signed for each participant, regardless of age.

The Reflections Of Grace Foundation is a nonprofit organization; www.reflectionsofgrace.org.

www.post-gazette.com/pg/12068/1215118-56.stm?cmpid=neighborhoods.xml 

Coins For The Cure: Village Elementary School Raises Funds For Pediatric Brain Cancer Research

Coins For The Cure: Village Elementary School Raises Funds For
Pediatric Brain Cancer Research
 
Coronado's Village Elementary School Student Council representatives presented a check for $379 to the McKenna Claire Foundation, a foundation dedicated to finding the cause and the cure for Pediatric Brain Cancer. The fund drive was part of the student council's year-long project to raise money and awareness for underfunded issues that impact children.

Each month, the Village Elementary Student Council selects a different cause to support. January's cause was pediatric brain cancer. Previous months focused on juvenile diabetes and pulmonary hypertension. March will be dedicated to raising money for the Coronado Schools Foundation. For every cause, the student council decorates and distributes classroom "coin" jars, collects and counts the money, posts signs around campus and encourages students to learn more about these very important issues.

Student council advisors, Ms. Shady, Ms. Garner, and Mr. Elderson, encourage students to build community and support philanthropic efforts. All three teachers emphasize that this project has been completely student driven, making it even more special. Fifth graders, Jack Outlaw and George Farley, raised the idea of supporting the McKenna Claire Foundation. Both said they heard McKenna's story and wanted to help other children.

McKenna, a vivacious, seemingly healthy, 7-year-old from Huntington Beach was suddenly diagnosed with a rare, inoperable brain stem tumor called Diffuse Intrinsic Pontine Glioma (DIPG). DIPG tumors, like many pediatric brain tumors, have very low survival rates. In July 2011, McKenna Claire lost her battle with cancer just six months after diagnosis.

The McKenna Claire Foundation's mission is to cure pediatric brain cancer by raising awareness, increasing community involvement and funding research. One of the foundation's near-term objectives is to raise money for innovative research being conducted at Stanford University's Monje Lab. Using cell cultures from children who have donated their tumors to research, including McKenna Claire, the Monje Lab is dedicated to understanding how DIPG tumors originate, the molecular signals that drive their growth, and novel ways to treat DIPG.

To learn more or donate visit: mckennaclairefoundation.org. For more information about the Monje Lab please visit: http://neurology.stanford.edu/labs/monjelab

Thursday, March 1, 2012

Monthly Newsletter February 2012


Welcome to the Cristian Rivera Foundation February Newsletter

As we first mentioned in last month’s newsletter, the Cristian Rivera Foundation is hard at work planning an exciting night at the theater that will help raise money toward our goal of curing DIPG. We are happy to announce that this exciting Cristian Rivera Foundation fundraiser performance of DC-7, the Roberto Clemente Story will take place on Thursday, March 22 at 8pm at the Puerto Rican Traveling Theatre. DC-7 is the award-winning musical commemorating the life and legacy of MLB Hall of Famer and humanitarian Roberto Clemente, the first Hispanic ever inducted into the Baseball Hall of Fame. This award-winning play received six awards from the Latin Critics Association, including Best Actor, Best Book and Best Musical. Cristian Rivera Foundation Founder John “Gungie” Rivera and Cristian Rivera Foundation Committee Members Ralph Mercado III and Miriam Colon are associate producers of the play, which is produced by Teatro SEA’s Manuel Moran.

We hope that you’ll join us for what is not only an exciting night of theater but also a great opportunity to support the Cristian Rivera Foundation. Tickets for this special performance are $67.50 and can be purchased by calling 212-779-2222 or by visiting http://cristianriverafoundation.org/events.html.

Please tell your friends and family not to miss this amazing event, and tell them to visit our website, www.cristianriverafoundation.org, our Facebook page, www.facebook.com/cristianriverafoundation, and our Twitter page @TweetCRF for the latest news on this and all of our exciting events, as well as updates on the latest breakthroughs in medical research that will one day cure DIPG. Remember, there are no known survivors of DIPG and this horrific disease claims the lives of 200-300 young children in the United States every year, typically within 3-18 months from diagnosis.

With your help, the Cristian Rivera Foundation can bring hope to the families devastated by DIPG and give these children a chance to live long, fruitful lives. Please support our cause by making a donation at http://cristianriverafoundation.org/donation.html. Any amount, big or small, is truly appreciated and will make a big difference in the lives of DIPG families. You may also send a check to the Cristian Rivera Foundation, 40 West 37th St, Suite 402, New York, NY 10018. The Cristian Rivera Foundation is a 501(c)(3) and all donations made to the Foundation are tax deductible.

You may also show your support for the Foundation by purchasing official Cristian Rivera Foundation merchandise, including t-shirts, signature blue wristbands and wood beaded bracelets with your choice of bronze or silver charm, which were inspired by Cristian’s Mommy Jenelle Asencio. To see all of the merchandise we have for sale, please visit http://cristianriverafoundation.org/shop.html or see the official Cristian Rivera Foundation merchandise catalog.

Thank you for your continued support of the Cristian Rivera Foundation. Remember to follow us on Twitter and Facebook for the latest updates, and don’t forget to purchase your tickets to the special Cristian Rivera Foundation fundraiser performance of DC-7, The Roberto Clemente Story, happening Thursday, March 22 at 8pm.

Full Steam Ahead!

Sincerely, “Cristian’s Mommy” Jenelle Asencio, John “Gungie” Rivera “Forever Cristian’s Daddy,” and all of the members of the Cristian Rivera Foundation Committee: Aldo Marin, Alex Garcia, Andy Epstein, Anthony Mason, Camilo, Carlos Colon, Carlos Keyes, Dr. Bear Walker, Dr. Ben Velazquez, Carlos R. Colon, Dolores Catania, Doug E. Fresh, Edward Caban, Elis Pacheco, Fernando Ferrer, Fulvia Lora, Funkmaster Flex, Hamlet Peralta, Jay Hernandez, Jeff Lavino, Jerry Chaparro, Jerry Salerno, J.I. Starr, Jim Jones, John “Jelly Bean” Benitez, Johnny Nuñez, Jose Alberto “El Canario,” Joseph Mbeh, Kamar De Los Reyes, Karen Cerna, Katie DeFlorio, Kenan Thompson, Khaliah Ali, Little Louie Vega, Luis Guzman, Manuel Alejandro Ruiz (Boy Wonder), Mark Rosner, Matthew “Mateo” Rajkumar, Melissa Chung, Miriam Colon, Murray Richman, Odalys Molina, Pablo Diaz, Ralph Mercado III, Ramon E. Javier, Ray Wong, Ricardo Cardona, Rickie Ricardo, Robert Vazquez, Ruben Sierra, Solange Osorio, Steve Cox, Tedsmooth, Tony Ferrara, Victor Martinez, Vito Bruno, William Padilla and William Pla.

Monday, February 13, 2012

CONGRESSIONAL TESTIMONY

This Testimony is Embargoed Until Thursday, February 2nd at 9:00 AM


Please visit: http://waysandmeans.house.gov/committeesubmissions/ and submit your comment for the record. There are many of us out there who have suffered as the result of losing our child and then having a thief take our kids' social security numbers. Please consider submitting a comment.


FROM: Jonathan Eric Agin, Esq.
TO: House Ways and Means Committee,
Subcommittee on Social Security
DATE: February 2, 2012
RE: H.R. 3475


Good morning Mr. Chairman and members of the Committee. Thank you for allowing
me to be here today to testify on this issue of vital importance.

My family's story begins with the diagnosis of our amazing daughter, Alexis Gina Agin, with a terminal brain tumor at the age of two on April 10, 2008. Ultimately, this terrible disease took her life on January 14, 2011, just two weeks shy of her fifth birthday. Alexis was and is my hero. Fighting valiantly until the end, she has inspired thousands around the world with her journey.

In 2010, my wife and I travelled with Alexis up and down the East Coast trying several experimental treatments, in a desperate attempt to save her. With each trip, Alexis' medical bills mounted. When it came time to file our 2010 taxes, compiling all of our receipts for the medical expenses was time-consuming and emotionally draining. Accordingly, my wife and I, through our accountant, filed with the IRS for an extension. In October 2011, after completing the difficult and grueling task of finalizing our 2010 taxes, I received a telephone call from our accountant advising us that someone had already filed a tax return for 2010 using Alexis' social security number. Beyond being completely stunned at that very moment, we were advised that we would not be able to file an electronic return. Instead, our accountant would have to complete the paper forms and file them in the traditional manner. More importantly for purposes of HR 3475, he told us that we ultimately would have to prove that our deceased daughter was, in fact, our daughter. In situations involving this type of criminal fraud, the IRS credits the first filer and presumes that the initial filing is accurate.

That same day, we reached out to the community of grieving cancer parents that we have come to know since April 2008 and told them what had happened. With incredulous amazement, we learned within a single hour of no fewer than fourteen other families whose children had died and also had experienced the additional travesty of their child's social security number being stolen. Clearly we were not alone. We then learned through our own research and from other parents that this is, in fact, a very widespread issue impacting parents who lose a child due to any and all reasons imaginable.

Not surprisingly, when I first learned that Alexis' social security number had been fraudulently used, I wanted to know how someone could have found it. Within a matter of seconds on the internet, I was able to locate her complete social security number and other personal identifying information, including her birth and death dates, on several websites intended for genealogical research. I immediately contacted one of the services, who directed me to the service's outside counsel. When I asked the attorney to remove my daughter's personal information from the website, he advised me that the service was within its legal rights to display the information and that it refused to remove her social security number. The attorney cited as support for their position a 1980 consent judgment between the United States Government and a private citizen, Ronald Perholtz. It was at that point that we truly realized how significant this problem is, and more importantly, how the federal government is partly to blame. It is my belief that the federal government is responsible for providing identity thieves the information required to commit this costly crime. By affording widespread access to this type of information, the federal government provides the perfect platform for the commission of this crime.

The common denominator in this story is the Death Master File (hereinafter "DMF"). The Social Security Administration makes the DMF available to the National Technical Information Service (NTIS) of the Department of Commerce, who then sells the DMF to private and public sector customers, including government agencies, financial institutions, investigative entities, credit reporting organizations, genealogical researchers and other industries. Some of
these purchasers, namely organizations hosting websites aimed at facilitating genealogical research, then make available the DMF for free to the public at large. It therefore is available to nearly anyone and perpetuates identity theft and fraud against the federal and state governments at astronomical levels. As a taxpayer and parent of a child who passed away from cancer, I am outraged at the most private information of our children being made commercially available.
Not only is this a significant invasion of my child's privacy, but it adds to the tremendous grief that my wife and I live with on a daily basis and will continue to live with for the rest of our lives. While it may seem trivial to some, Alexis' social security number is one of the only things that we have left of her identity. Thus, the theft of it robbed us of something truly priceless.

Due to an ongoing media probe and public pressure, the IRS for the first time recently responded to inquiries on this issue, and estimated that there were approximately 350,000 fraudulent tax filings in 2010. According to IRS officials, these fraudulent filings claimed $1.25 billion in refunds.1 The cost to the federal government to investigate and prosecute that magnitude of fraud could be spent in much better ways, including research to fund cures for our children.

In addition, it is worth noting that the federal government discloses far more information than is required under the 1980 settlement. In June 2008, the Inspector General of the Social Security Administration issued a critical report detailing how publication of the DMF has resulted in the breach of citizens' personally identifiable information.2 The report concludes that
the Social Security Administration "discloses far more detailed personal information in the DMF than required under the original consent judgment that resulted in the creation of the DMF. Under the terms of the agreement, SSA was to compile a list that identified deceased numberholders' SSNs, surnames and dates of death. However, SSA expanded the information published in the DMF to include the decedent's date of birth, first and middle name, and last known residential state/zip code."3 The report's conclusion is simple: less information should be released, and greater efforts at accuracy and protection must be taken.

Significantly, Ronald Perholtz, the man who filed the lawsuit that led to the 1980 consent judgment resulting in creation of the DMF, sought release of the information to help reduce fraud. Specifically, he wanted the information as a tool for pension companies to identify theft of pension benefits. Soon after learning the DMF was created, Mr. Perholtz learned that the DMF frequently listed the social security numbers of people who were not, in fact, dead.4
Now, he believes that changes need to be made in order to stop this type of fraud. Indeed, Mr. Perholtz stated that he is willing to renegotiate the original settlement as he feels so strongly that the DMF is being abused.5

H.R. 3475 is a solution to a significant problem that affects not only grieving parents, but also every family who loses a loved one. It also is a solution to a problem that was never anticipated, and would eliminate dissemination by the federal government of extraneous information that it is not required to release. This additional information, along with the readily accessible nature of individuals' social security numbers, has provided identity thieves an avenue
to commit this crime and defraud the taxpayers and government.

Those who argue that the release of this information is critical to combat fraud and conduct genealogical research fail to understand that this Bill is not intended to prevent or limit the lawful use of Social Security Numbers or genealogical research. First, I would say to any individual conducting genealogical research, why do you need to know my daughter's social security number? Why should it be publicly available to anyone with a computer? What purpose does her full social security number, along with her birth and death dates, address, and
other personal identifying information have for your familial research? The clear answer is that it has absolutely no purpose. Alexis didn't die a long time ago—she died last year. While it may be difficult to find information about your ancestors from generations ago, it should not be hard to confirm your familial connection (or lack thereof) to someone born just six years ago.

More importantly, this Bill will not prevent credit bureaus and financial institutions from fulfilling their charge of protecting us from fraud. To the contrary, because access to this information will be more restricted, these institutions will be more empowered knowing that the potential incidence rates of identity theft and fraud will be curtailed. Potentially far fewer
instances of fraud against lawful citizens will be committed, thus reducing the amount of investigation necessary. The intent of this legislation is not to limit or prohibit financial institutions from investigating fraud; rather it is to prohibit the widespread publication and easy access of personal information that is utilized by criminals to defraud the government. As for hospitals and other institutions who claim to utilize the DMF to determine if their patients are
deceased, I submit that there are other far less destructive methods to make such determinations and conduct your research. Again, this Bill is not aimed at those who have a legitimate need for access to individuals' social security numbers and they will continue to have access to this information.

I have been told that in most cases, the government does not have the resources to
prosecute this crime. It either is too costly, or the government simply does not have the ability to track and punish those who are stealing from it and taxpayers alike. If this crime was prevented, to the best extent possible upfront with this simple measure, there would be little concern regarding the cost to prosecute as more resources could be made available, stiffer penalties proscribed and additional deterrents fully understood.

In closing, this is not a victimless crime. My daughter is a victim. She was victimized twice. Once by the cancer that stole her from this earth, and then by a cold-hearted criminal who stalked her and utilized her death for profit. It disgusts me to no end to know that someone prayed upon my daughter's death for his or her own gain. It is an added insult for a grieving parent. It is nothing short of a despicable crime and the release of Alexis' complete social security number and other personal identifiers to the general public facilitated this crime. But
this simply is not an emotionally charged issue, as some argue. Fraud is not something that we simply should accept as a necessary consequence of easy access to information. Yes, security breaches will always be possible regardless of the measures that we put into place. But when there is a simple fix to a significant problem that affects all taxpayers, the fix should be taken seriously and enacted with haste. It is time that this loophole is closed and this legislation is the
manner in which to accomplish this aim. Nothing short of this will accomplish the task. It is simple and to the point, and in this era when our government is struggling to find ways to save money for the taxpayer, it is a very easy fix with little to no consequences or repercussions to citizens of this country.

Thank you Mr. Chairman and distinguished members of the Committee.
Jonathan Eric Agin


1 Dale McFeatters, Govt. shares blame as ID theft worsens, available at
http://bostonherald.com/news/opinion/op_ed/view/2011_1105govt_shares_blame_as_id_theft_worsens
(November 5, 2011).

2 Office of the Inspector General, Social Security Administration, Personally Identifiable Information Made
Available to the General Public Via the Death master File
, Audit Report A-06-08-18042 (June 2008).

3 Id. at 6.

4 Thomas Hargrove, Social Security 'Death File' designed to fight fraud but now aids it, available at
www.scrippsnews.com (November 14, 2011).

5 Id.

Wednesday, February 1, 2012

Cancer sequencing initiative discovers mutations tied to aggressive childhood brain tumors

St. Jude Children's Research Hospital – Washington University Pediatric Cancer Genome Project provides first evidence linking cancer to mutations in genes involved in DNA organization
St. Jude Children's Research Hospital – Washington University Pediatric Cancer Genome Project provides first evidence linking cancer to mutations in genes involved in DNA organization


 Memphis, Tennessee, January 29, 2012

Researchers studying a rare, lethal childhood tumor of the brainstem discovered that nearly 80 percent of the tumors have mutations in genes not previously tied to cancer. Early evidence suggests the alterations play a unique role in other aggressive pediatric brain tumors as well.
The findings from the St. Jude Children’s Research Hospital – Washington University Pediatric Cancer Genome Project (PCGP) offer important insight into a poorly understood tumor that kills more than 90 percent of patients within two years. The tumor, diffuse intrinsic pontine glioma (DIPG), is found almost exclusively in children and accounts for 10 to 15 percent of pediatric tumors of the brain and central nervous system.
“We are hopeful that identifying these mutations will lead us to new selective therapeutic targets, which are particularly important since this tumor cannot be treated surgically and still lacks effective therapies,” said Suzanne Baker, Ph.D., co-leader of the St. Jude Neurobiology and Brain Tumor Program and a member of the St. Jude Department of Developmental Neurobiology. She is a corresponding author of the study published in the January 29 online edition of the scientific journal Nature Genetics.
DIPG is an extremely invasive tumor that occurs in the brainstem, which is at the base of the skull and controls such vital functions as breathing and heart rate. DIPG cannot be cured by surgery and is accurately diagnosed by non-invasive imaging. As a result, DIPG is rarely biopsied in the U.S. and little is known about it.
Cancer occurs when normal gene activity is disrupted, allowing for the unchecked cell growth and spread that makes cancer so lethal. In this study, investigators found 78 percent of the DIPG tumors had alterations in one of two genes that carry instructions for making proteins that play similar roles in packaging DNA inside cells. Both belong to the histone H3 family of proteins. DNA must be wrapped around histones so that it is compact enough to fit into the nucleus. The packaging of DNA by histones influences which genes are switched on or off, as well as the repair of mutations in DNA and the stability of DNA. Disruption of any of these processes can contribute to cancer.
Researchers said that the mutations seem unique to aggressive childhood brain tumors.
“It is amazing to see that this particular tumor type appears to be characterized by a molecular ‘smoking gun’ and that these mutations are unique to fast-growing pediatric cancers in the brain,” said Richard K. Wilson, Ph.D., director of The Genome Institute at Washington University School of Medicine in St. Louis and one of the study’s corresponding authors. “This is exactly the type of result one hopes to find when studying the genomes of cancer patients.”
The results are the latest from the PCGP, an ambitious three-year effort to sequence the complete normal and cancer genomes of 600 children with some of the most poorly understood and aggressive pediatric cancers. The human genome includes the complete set of instructions needed to assemble and sustain human life. The goal is to identify differences that explain why cancer develops, spreads and kills. Researchers believe the findings will provide the foundation for new tools to diagnose, treat or prevent the disease.
For this study, researchers sequenced the complete normal and cancer genomes of seven patients with DIPG. “The mutations were found at such high frequency in the cancer genomes of those seven patients that we immediately checked for the same alterations in a larger group of DIPGs,” Baker said. When researchers sequenced all 16 of the related genes that make closely related variants of histone H3 proteins in an additional 43 DIPGs, they found many of the tumors contained the same mistakes in only two of these genes.
Of the 50 DIPG tumors included in this study, 60 percent had a single alteration in the makeup of theH3F3A gene. When the mutated gene was translated into a protein, the point mutation led to the substitution of methionine for lysine as the 27th amino acid in this variant of histone H3 protein. Another 18 percent of the DIPG patients carried the same mistake in a different gene, HIST1H3B.
Researchers are now working to understand how mutations in H3F3A and HIST1H3B impact cell function and contribute to cancer. Earlier research provides some clues. The lysine that is mutated is normally targeted by enzymes that attach other molecules to histone H3, influencing how it interacts with other proteins that regulate gene expression, Baker said. Mutations in the enzymes that target histone H3 have been identified in other cancers, but this is the first report showing a specific alteration of histones in cancer.
H3F3A and HIST1H3B were also mutated in other aggressive childhood brain tumors, glioblastoma, that develop outside the brain stem. Of 36 such tumors included in this study, 36 percent carried one of three distinct point mutations in the genes. The alterations included another single change in the makeup of H3F3A not found in DIPGs.
The histone H3 genes, however, were not mutated in any of the 252 other childhood tumors researchers checked for this study. The list included the brain tumors known as low-grade gliomas, medulloblastomas and ependymomas plus other cancers outside the brain and nervous system. The H3 changes have not been reported in any other cancers, including adult glioblastoma. “This suggests these particular mutations give a very important selective advantage, particularly in the developing brainstem and to a lesser degree in the developing brain, which leads to a terribly aggressive brain tumor in children, but not in adults,” Baker said.
“This discovery would not have been possible without the unbiased approach taken by the Pediatric Cancer Genome Project,” Baker said. “The mutations had not been reported in any other tumor, so we would not have searched for them in DIPGs. Yet the alterations clearly play an important role in generating this particular tumor.”
The study’s first authors are Gang Wu, Alberto Broniscer and Troy McEachron, all of St. Jude. The study’s other corresponding authors are Jinghui Zhang and James Downing, both of St. Jude. The other study authors are Charles Lu, Li Ding and Elaine Mardis, all of Washington University; and Barbara Paugh, Jared Becksfort, Chunxu Qu, Robert Huether, Matthew Parker, Junyuan Zhang, Amar Gajjar, Michael Dyer, Charles Mullighan, Richard Gilbertson and David Ellison, all of St. Jude.
The research was funded in part by the PCGP, including Kay Jewelers, a lead project sponsor; the National Institutes of Health, the Sydney Schlobohm Chair of Research from the National Brain Tumor Society; the Cure Starts Now Foundation, Smile for Sophie Forever Foundation, Tyler’s Treehouse Foundation, Musicians Against Childhood Cancer, the Noyes Brain Tumor Foundation and ALSAC.
St. Jude Children’s Research Hospital
Since opening 50 years ago, St. Jude Children’s Research Hospital has changed the way the world treats childhood cancer and other life-threatening diseases. No family ever pays St. Jude for the care their child receives and, for every child treated here, thousands more have been saved worldwide through St. Jude discoveries. The hospital has played a pivotal role in pushing U.S. pediatric cancer survival rates from 20 to 80 percent overall, and is the first and only National Cancer Institute-designated Comprehensive Cancer Center devoted to children. It is also a leader in the research and treatment of blood disorders and infectious diseases in children. St. Jude was founded by the late entertainer Danny Thomas, who believed that no child should die in the dawn of life. Join that mission by visiting www.stjude.org or following us on www.facebook.com/stjude and Twitter@StJudeResearch.
Washington University School of Medicine
Washington University School of Medicine’s 2,100 employed and volunteer faculty physicians also are the medical staff of Barnes-Jewish and St. Louis Children’s hospitals. The School of Medicine is one of the leading medical research, teaching and patient care institutions in the nation, currently ranked fourth in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and St. Louis Children’s hospitals, the School of Medicine is linked to BJC HealthCare.

St. Jude Media Relations Contacts
Summer Freeman
(desk) (901) 595-3061
(cell) (901) 297-9861
summer.freeman@stjude.org       
Carrie Strehlau
(desk) (901) 595-2295
(cell) (901) 297-9875
carrie.strehlau@stjude.org.

Washington University Media Relations Contact
Caroline Arbanas
(cell) (314) 445-4172
(desk) (314) 286-0109
arbanasc@wustl.edu
http://www.stjude.org/baker-DIPG

A soo-weet collaboration between entrepreneurship, philanthropy, and BBQ

Hogs for the Cause founders Becker Hall and Rene Louapre with their inspiration, Ben.
Hogs for the Cause founders Becker Hall and Rene Louapre
with their inspiration, Ben

This post is dedicated to the memory of Ben Sarrat Jr. for the movement he inspired.

The formula for the first annual pig roast was simple: a few friends, a pig, and a keg. However, when Hogs for the Cause founders Becker Hall and Rene Louapre met Ben Sarrat, Jr., they were inspired to use their pig roast at the Fly to raise money for a family friend in need.

With that newfound motivation and drive, the duo has turned what was an idea for a small, pork infused gathering with friends into a highly anticipated festival that continues to triple in size each year.

In true New Orleans form, Hall and Louapre go back to childhood. Having grown up together, they always considered each other as brothers, and now play the roles of business partners with equal ease. Part of their success can be traced to the evident camaraderie and balance between the businessman and the lawyer, but their conviction and motivation has turned the young professionals into moonlighting entrepreneurs and philanthropists.

In 2009, the two friends and culinary aficionados came up with the idea of hosting a pig-roast, a tailgate tradition from Hall's alma mater at the University of South Carolina, and a surprisingly new concept to New Orleans.

Shortly after they decided to add a philanthropic component to their roast, they met Ben. The young son of a family friend had been diagnosed with DIPG, an incurable brain tumor that cannot be removed because of its location on the brain stem, typically giving those who are diagnosed only one year of survival after detection. Hall and Louapre were taken by Ben's enthusiasm and courage and decided to use their pig roast to raise money to help him and his family. Within a month, Hogs for the Cause was incorporated and registered as a 501c(3) non-profit organization.

"Meeting Ben was a really profound moment for us both, and immediately changed everything," Hall says of this pivotal moment that inspired their endeavor. "Even with such terrible circumstances, he still continued to have a genuine enthusiasm for life. At that point, we decided to do whatever we could to help Ben have the happy childhood he deserved."

In their first year, Hall and Louapre, along with 250 friends, raised $10,000 to help support Ben's family with their expenses. However, they knew they could do more.

The week before their second Hogs for the Cause, Ben tragically lost his battle to DIPG. However, his story only reinforced Hall and Louapre's mission and drive to continue their fundraising for other families. In its second year, Hogs for the Cause drew in 2,500 people and raised $30,000, with a large portion of it going to support families like the Sarrats.

Hogs for the Cause's mission is to alleviate some of the financial burden families face when a child is being treated for pediatric brain cancer. The money raised goes toward grants that help cover the peripheral expenses that insurance does not otherwise pay for, such as travel and lodging expenses incurred during cancer treatment.

Hall and Louapre filled a void of funding resources for pediatric cancer outreach services, as well as another void that New Orleans was ironically missing: pork cook-offs. In 2011, Hogs for the Cause moved from the Fly to City "Pork," where they raised $100,000 for their cause, along with the help of 45 teams battling it out with their pork creations and 7,000 attendees.

And that was only year three.

This year, within three weeks of registration opening, 60 spots were filled with teams of pork enthusiasts, amateur cooks, award-winning BBQ experts, and renowned chefs and restaurant owners. Besides their genuine enthusiasm to support the cause, the teams participate for the opportunity to prove their culinary skills and compete for the ultimate title of Grand Champion. To them, the pork cook-off is merely the grand finale of a year spent practicing recipes and practicing witty twitter banter and intimidation between the teams. (I train my stomach's pork capacity by reading their twitter feeds during this time. I recommend you do the same.)

The participants all compete in several categories, including Ribs, Whole Hog, Butt, Porkpourri, Grand Champion (who must Compete in three of the four aforementioned categories), Best Booth and Presentation, Fundraising Champion, Best Sauce, and Fan Favorite, which gives the fans a voice and opportunity to vote through the Hogs for the CauseiPhone app.

While Hogs for the Cause founders are grateful for the loyalty and enthusiasm of all the competitors, the team members continue to gain recognition for their participation in the competition as well. After winning last year's Porkpourri category, Chef Adam Biderman credited his participation in Hogs for the Cause for the inadvertent loyal following he built before opening The Company Burger last August.

This year, Biderman will be back to defend his title and continue his support to the cause, along with other local chefs, including Aaron Burgau of Patois, Drew Dzejak of The Windsor Court's Grill Room, Chefs Allison and Slade Rushing from MiLa, and Le Petite Grocery's Chef Justin Devillier, just to name a few.

Hogs for the Cause is March, 24th 2012

Hogs for the Cause is March, 24th 2012
Hogs for the Cause is March, 24th 2012


Six bands have also been confirmed to perform on theNOLA Brewing stage this year, includingTrombone Shorty & Orleans Avenue,Voice of the Wetlands All-Stars, 2012 Grammy nominated artistMarcia Ball, The Stooges Brass Band,Mississippi Rail Company, and Austin, Texas' The Gourds.

While the event now launches the beginning of festival season in New Orleans and continues to grow significantly each year, Hall and Louapre still find that the greatest reward is being able to help their grant recipients.

"The greatest feeling in the world is walking into a room and delivering to a family a sign of hope," said Louapre about his motivation to continue the growth of the annual cook-off. "These are families with odds stacked against them. Their child is fighting against a brutal killer, and to be able to deliver just a small dose of help -- a reassurance that people care and a big hug of humanity -- makes it all worth it."

The entrepreneurial-minded team attributes the growth of their brand to their conviction and passion to help the families in need. And, when asked about where they see Hogs for the Cause in five years, they both agreed on being at the forefront of funding sources for pediatric brain cancer outreach services. Louapre added, "The cook-off will have 125 teams, there will be two stages of live music, and Becker and I (who have known each other our whole lives and are almost brothers) will still be fighting over minor details as we continue to make Hogs better."

Hall's vision includes taking the fundraising to a national level with cook-offs across the country.

While they might already be sparring about the exact coordinates of their five-year benchmark, it's unmistakable that their brotherly dynamic has helped them surpass even their own expectations. So, who's to say it won't all be possible?

The country's largest cook-off and nationally renowned charity based out of New Orleans is merely just a baby step toward what they can accomplish together. What's in store for March 24, 2012? Meatier competition, a new music lineup, larger location in City "Pork," an adult "porkade," frolf (frisbee-golf) games, a new iPhone app, and bigger fundraising goals.

To learn more, purchase tickets, and make a donation, visit their website, and follow them on Twitter and Facebook for all the updates and witty pork puns. Download the iPhone app to learn more about Hogs for the Cause, stay updated with the competition, vote for fan favorite, and purchase tickets.

Pre-Sale General admission tickets for $10, as well as ticket packages that include unlimited food and beer, judging privileges, and access to the "Boss Hog" tent, are available now and can be purchased online or on the iPhone App.

http://www.nola.com/nolavie/index.ssf/2012/01/a_soo-weet_collaboration_betwe.html

Friday, January 27, 2012

PATIENT GROUPS AND RESEARCHERS JOIN FORCES TO SPEED TREATMENTS FOR RARE PEDIATRIC BRAIN TUMOR

Four Organizations Fund International Research Consortium to Improve Lives of Children Suffering From Diffuse Intrinsic Pontine Glioma (DIPG)

Accelerate Brain Cancer Cure (ABC2), CureSearch for Children's Cancer, The Cure Starts Now Foundation and The Lyla Nsouli Foundation for Children's Brain Cancer Research today announced their collaborative funding to support groundbreaking research aimed at dramatically improving the lives of children suffering from Diffuse Intrinsic Pontine Glioma (DIPG) – one of the most devastating pediatric cancers.

Together, the four organizations have committed $229,000 to support the work of the DIPG Preclinical Consortium, the only international scientific group focused on preclinical development of targeted therapy combinations for DIPG. The goal of the research is to test and then move the most effective therapy forward to early phase clinical trials in the next 18 – 24 months.

Children with DIPG have a uniformly dismal prognosis with a median survival of 9 months. A DIPG tumor grows amidst the nerves in the pons (middle) of the brain stem, and therefore cannot be surgically removed. Radiotherapy provides only temporary improvement of symptoms. No chemotherapy has ever proven effective. Novel therapies are desperately needed. "The scientific community has truly rallied around this cause. The mandate for a novel therapeutic approach was born in the Children's Oncology Group brain tumor committee under the bold leadership of Dr. Amar Gajjar. With the consortium co-leadership of clinical trialist Maryam Fouladi and the accountability to DIPG patients and their family, this program is moving unexpectedly quickly towards its goal," says Charles Keller, MD, Associate Professor and leader of the Pediatric Cancer Biology Program, Pape' Family Pediatric Research Institute in the Department of Pediatrics at Oregon Health & Science University.

"If we succeed, it will be because families that have donated their children's tumor gave us this opportunity. We are reminded every day that the cultures we study are parent-directed Legacy Gifts of the most selfless kind from children who current therapy could not save (the brain stem being vital to life; therefore, tumor donation can only occur at autopsy). What ABC2 , CureSearch for Children's Cancer, the Lyla Nsouli Foundation, and The Cure Starts Now have done to make our consortium possible, and so quickly, is unprecedented – and greatly appreciated," adds Dr. Keller.

The research project entitled, "Rapid Preclinical Development of a Targeted Therapy Combination for DIPG" was launched with initial support from The Cure Starts Now Foundation. Two additional European labs were added to the project with funding from The Lyla Nsouli Foundation for Children's Brain Cancer Research (based in London, UK).

The funding from ABC2 and CureSearch for Children's Cancer added a cutting-edge functional genomics component that will prioritize potential new drug targets. "We are proud to support this multi-national team of researchers in their efforts to rapidly develop effective drugs to treat children suffering from DIPG," said Max Wallace, CEO of ABC2. "By combining forces with our non-profit partners, ABC2 looks forward to leveraging the resources and expertise of all the organizations to improve the lives of children with cancer." John Lehr, president and CEO of CureSearch for Children's Cancer echoed Wallace's comments saying that "developing new drug targets is an integral step to providing children with DIPG a better prognosis. CureSearch is committed to funding research in rare cancer types so that one day, all children will be guaranteed a cure." Keith Desserich, Chairman and Co-Founder of The Cure Starts Now Foundation added, "innovative strategies such as Dr. Keller's and his collaborators will help lead to a revolution in cancer care for all. Not only by focusing on rare cancers like DIPG can we offer hope to children fighting this disease, but we also learn vital skills that may ultimately lead to a cure for all cancers; and in this way, this may be the start of a truly homerun strategy in cancer cures."

About the DIPG Preclinical Consortium
The multi-national consortium is identifying potentially important biological pathways in DIPGs that are readily targetable with currently available molecularly-targeted agents. In addition, the consortium has successfully grown human DIPG tumors from autopsy materials in the petri dish and has developed mouse models of DIPG – a key resource to functionally testing potential therapies.

Since the number of children with this unfortunate disease is limited, and the number of available targeted agents is quite large, the consortiumhypothesizes that it can identify a promising combination of molecularly-targeted agents using functional genomics to prioritize targets. The ultimate goal is to move the most effective single agent or combination therapy forward to early phase clinical trials in the next 18-24 months.

The DIPG Preclinical Consortium team includes:

Charles Keller MD, Kellie Nazemi MD and Nate Selden MD, PhD at Oregon Health & Science University
Oren Becher MD, Duke University Medical Center
Michelle Monje MD, PhD, Stanford University
Maryam Fouladi MD, Cincinnati Children's Hospital Medical Center
Cynthia Hawkins, MD, PhD, University of Toronto
Xiao-Nan Li MD, PhD, Baylor College of Medicine
Dannis G. van Vuurden MD, MSc, & Esther Hulleman, VU Cancer Center Amsterdam
Jacques Grill, Institut Gustave-Roussy, Villejuif, France

For More Information about the Research Funding Partners:

Accelerate Brain Cancer Cure: www.abc2.org
CureSearch for Children's Cancer: www.curesearch.org
The Cure Starts Now Foundation: www.curestartsnow.org
The Lyla Nsouli Foundation for Children's Brain Cancer Research: www.lylansoulifoundation.org


www.abc2.org/article/patient-groups-and-researchers-join-forces-speed-treatments-rare-pediatric-brain-tumor

Wednesday, January 25, 2012

Remembering Cristian Rivera


On January 25, 2009, the world lost a smart, brave and all-around remarkable 6-year-old boy named Cristian Rivera as his two-year battle with DIPG came to an end. Three years later, we remember Cristian on the anniversary of the day he earned his wings and went to Heaven. Cristian is loved and missed dearly by his father John "Gungie" Rivera, his mother Jenelle Asencio, his big brother JC, his sister Brittnee Hudson, the rest of his friends and family and everyone at The Cristian Rivera Foundation. Throughout his illness, Cristian remained positive and never let the cancer get the best of him. Though his life was cut tragically short, Cristian made an everlasting impression with his affection, loyalty and good sense of humor. His legacy will never be forgotten as we work tirelessly in his name to find a cure for the disease that took his young life.

Monthly Newsletter January 2012

Happy New Year from the Cristian Rivera Foundation.

January is always a difficult month for us because January is the month when Cristian Rivera lost his hard-fought battle with DIPG after two years. On January 25, 2009, the world lost a smart, brave and all-around remarkable 6-year-old boy. Three years later, we remember Cristian on the anniversary of the day he earned his wings and went to Heaven. Cristian is loved and missed dearly by his father John “Gungie” Rivera, his mother Jenelle Asencio, his big brother JC, his sister Brittnee Hudson, the rest of his family and friends, and everyone at The Cristian Rivera Foundation.

Wednesday, January 4, 2012 marked two years since DIPG took the life of another amazing young boy named Javier "Buji" Villamil. During his short life, Buji was a great athlete who loved sports, George Lopez, iCarly and Scooby Snacks fruit snacks. He earned his wings a few months shy of his 12th birthday and will forever be missed by his family—including his mom Rosemary Lora, dad Gabriel Villamil and aunt Fulvia Lora, a committee member with the Cristian Rivera Foundation—as well as his friends and everyone who has had the pleasure to meet him. We at the Cristian Rivera Foundation are keeping Buji and his family in our thoughts and prayers on this difficult anniversary.

Despite the sadness we feel remembering Cristian, Buji and all the young lives DIPG has taken from us, 2012 is shaping up to be a big year for us and the entire DIPG community. Beginning this month, the Cristian Rivera Foundation officially supports the research of Dr. Oren Becher, a pediatric neuro-oncologist who has dedicated his career to improving therapies for children with brain tumors with a particular focus on identifying effective therapies for children with DIPG.

Since setting up an independent study lab at Duke University in 2010, Dr. Becher’s six-person lab has sought to solve the mysteries behind the cause, make up and cure of DIPG tumors using genetic mouse models of cancer. The lab currently generates 10-15 DIPGs per month in their mouse colony and uses the tumors to both study the biology of DIPG and to evaluate the efficacy of new cancer drugs. Through this research, Dr. Becher says he and his team are now starting to understand all of the genetic changes that DIPGs harbor, thanks in part to tumor tissue from Cristian Rivera that was donated after he passed away.

“We have analyzed all the genes in Cristian’s tumor and we learned that Cristian’s tumor had the most common genetic driver that is known to drive the formation of DIPG. Approximately 30 percent of DIPGs have this common genetic driver,” said Dr. Becher. “Coincidentally, I used the same genetic driver to develop a DIPG mouse model. So in my opinion, if we can identify drug combinations that can cure our genetic DIPG mouse model, these drug combinations will also be active in children with DIPG whose tumors harbor this common genetic driver.”

We’re proud that Cristian’s tumor tissue has been such an instrumental part of Dr. Becher’s research and we look forward to supporting and funding his work. As you know, we already support the work of Dr. Mark Souweidane and this month, he finally begins his pioneering clinical trial aimed at finding a cure for DIPG by using convection-enhanced delivery (CED) to administer radio immunotherapy to children with DIPG. Dr. Souweidane officially received FDA approval for the trial on Thursday, December 29, 2011, which is expected to begin in the last week of January. Twelve patients will be selected.

We are so excited that Dr. Souweidane’s path to a cure has finally gotten the green light, so imagine our reaction when we also heard that Dr. Souweidane performed his first DIPG biopsy on a young girl named Olivia Boccuzzi on Friday, January 6. Olivia was only 22 months old when she was diagnosed with DIPG on September 21 of last year. After six weeks of radiation and medication, an MRI showed that Olivia’s tumor exhibited a significant amount of necrosis, explained Olivia’s mother Enza. Olivia’s parents consulted with Dr. Souweidane, who agreed to perform the biopsy and, after one night in the ICU, we’re proud to report that Olivia returned home and the operation was a success.

All these huge steps toward a cure empower is to continue working tirelessly in Cristian’s name to find a cure for the disease that took his young life. Please help us get even closer to our goal of curing DIPG once and for all by visiting http://cristianriverafoundation.org/donation.html and making a tax-deductible donation via Paypal. You can also mail a check to the Cristian Rivera Foundation at 40 West 37th Street, Suite 402, New York, NY 10018. Every donation big or small brings us closer to curing DIPG and we appreciate all of the amazing support we have received so far.

One Cristian Rivera Foundation committee member in particular has shown amazing strength and courage in the fight against DIPG and Cristian Rivera Foundation founder John “Gungie” Rivera wanted to take a moment to recognize her for her dedication to our cause.

As founder of the Cristian Rivera Foundation, I would like to take a moment to express my sincerest gratitude to one of our most active and dedicated committee members, Solange Osorio. Solange has been a committee member basically since the foundation began and even though she has never had or lost a child to DIPG, she has shown more devotion to finding a cure and comforting and helping DIPG families than anyone I know. She selflessly dedicates time from her busy schedule every week and has even put her education second to the needs of the DIPG community. She volunteers at every Cristian Rivera Foundation event, attends many other DIPG events, and has provided the décor for every Cristian Rivera Foundation Gala, even going so far as to skip shopping for her outfit to the Third Gala just to make sure that everything was running smoothly. Solange has shown amazing compassion towards DIPG families and has been the communicator between the foundation and the DIPG community. I communicate with the doctors and certain foundations, and she deals with everyone else. She always remembers to send a Christmas card to a DIPG family, an email to find out how a sick child is doing, a message of encouragement in tough times, an acknowledgment of DIPG Angel anniversaries and everything in between. She is well-known within the DIPG community for the kindheartedness and care she puts into every interaction. Thank you for all of your hard work and dedication. Thank you for being my friend and standing by me in my quest to rid the world of DIPG. For this and so much more, I Love Her.

Everyone at the Cristian Rivera Foundation is grateful for Solange’s contribution, along with the donations and support we receive from every member of the Cristian Rivera Foundation family. Remember to visit www.cristianriverafoundation.org, which we’ve recently revamped with new tabs with informative DIPG content such as ongoing clinical trials, helpful information for understanding DIPG biopsies, and the latest news from the Cristian Rivera Foundation and the entire DIPG community. You can also make a tax-deductible donation on our website, or purchase Cristian Rivera Foundation merchandise, like official foundation wristbands, t-shirts, wood beaded bracelets and necklaces with your choice of bronze or silver charm. The official Cristian Rivera Foundation Merchandise Catalog is available for you to download and show your friends, family and colleagues all of the exciting products we offer in support of our cause. Also make sure to follow us on Twitter @tweetcrf and on Facebook at www.cristianriverafoundation.org to get the latest updates on all our upcoming events.

Next month, the Cristian Rivera Foundation will host a special charity performance of DC-7, The Roberto Clemente Story at the Puerto Rican Traveling Theatre in Times Square. DC-7 is a bilingual musical that tells the amazing story of Hall of Famer Roberto Clemente, one of the most beloved figures in the history of Major League Baseball. The Society of the Educational Arts (SEA), under the direction of Manuel Moran, has partnered with Cristian Rivera Foundation founder John “Gungie” Rivera and Cristian Rivera Foundation Committee Members Ralph Mercado III and Miriam Colon to bring this amazing production to New York for a limited run.

DC-7 was recently nominated for 7 ATI Awards (Independent Theater Awards), including Best Musical. The show has already won 6 ACE Awards from the Latin Critics Association, including Best Musical, Best Director and Best Book for writer-director Luis Caballero, Best Actor for Modesto Lacen, Best Actress for Lorraine Velez and Best Supporting Actress for Xiomara Rodríguez.

Visit www.teatrosea.org to find out more about the show and keep checking our website, Facebook and Twitter for the latest details on dates, times and ticket prices for our special night at the theater. We look forward to seeing you there and we look forward to all of the great things ahead for us in 2012. Full Steam Ahead!

Sincerely,
“Cristian’s Mommy” Jenelle Asencio, John “Gungie” Rivera “Forever Cristian’s Daddy,” and all of the members of the Cristian Rivera Foundation Committee: Aldo Marin, Alex Garcia, Andy Epstein, Anthony Mason, Camilo, Carlos Colon, Carlos Keyes, Dr. Bear Walker, Dr. Ben Velazquez, Carlos R. Colon, Dolores Catania, Doug E. Fresh, Edward Caban, Elis Pacheco, Fernando Ferrer, Fulvia Lora, Funkmaster Flex, Hamlet Peralta, Jaison Newring, Jay Hernandez, Jeff Lavino, Jerry Chaparro, Jerry Salerno, J.I. Starr, Jim Jones, John “Jelly Bean” Benitez, Johnny Nuñez, Jose Alberto “El Canario,” Joseph Mbeh, Kamar De Los Reyes, Karen Cerna, Katie DeFlorio, Kenan Thompson, Khaliah Ali, Little Louie Vega, Luis Guzman, Manuel Alejandro Ruiz (Boy Wonder), Mark Rosner, Matthew “Mateo” Rajkumar, Melissa Chung, Miriam Colon, Murray Richman, Odalys Molina, Pablo Diaz, Ralph Mercado III, Ramon E. Javier, Ray Wong, Ricardo Cardona, Rickie Ricardo, Robert Vazquez, Ruben Sierra, Solange Osorio, Steve Cox, Tedsmooth, Tony Ferrara, Victor Martinez, Vito Bruno, William Padilla and William Pla.