Dr. Mark Souweidane, a neurosurgeon at Memorial Sloan Kettering and the Director of the Weill Cornell Pediatric Brain and Spine Center, officially received FDA approval on Thursday, December 29, 2011 for his pioneering clinical trial aimed at finding a cure for Diffuse Intrinsic Pontine Glioma. Dr. Souweidane will be selecting 12 patients for the trial, which is expected to begin in the last week of January. The innovative use of convection-enhanced delivery (CED) will be the first of its kind to administer radio immunotherapy to children with an otherwise incurable tumor. The doctor has worked for the past 12 years to cure the inoperable tumor, which takes the life of 200 children in the United States every year, typically within three to 18 months after diagnosis.
Friday, December 30, 2011
FDA Officially Approves Clinical Trial Headed By Dr. Mark Souweidane
Dr. Mark Souweidane, a neurosurgeon at Memorial Sloan Kettering and the Director of the Weill Cornell Pediatric Brain and Spine Center, officially received FDA approval on Thursday, December 29, 2011 for his pioneering clinical trial aimed at finding a cure for Diffuse Intrinsic Pontine Glioma. Dr. Souweidane will be selecting 12 patients for the trial, which is expected to begin in the last week of January. The innovative use of convection-enhanced delivery (CED) will be the first of its kind to administer radio immunotherapy to children with an otherwise incurable tumor. The doctor has worked for the past 12 years to cure the inoperable tumor, which takes the life of 200 children in the United States every year, typically within three to 18 months after diagnosis.
Thursday, December 29, 2011
11-year-old Victim of Brain Tumor Exhibited Zest Beyond Her Years She raised $350,000, participated in medical trials and did 100 paintings.
By Sandy StricklandWhile she was dying from a brain stem tumor, 11-year-old Ellie Kavalieros showed others how to live.
She participated in a painful vaccine trial that she knew probably wouldn't save her but would provide valuable data for those diagnosed in the future.
She inspired events that brought in more than $350,000 for a research fund in her honor.
She did 100 paintings and had a show at the Cummer Gallery of Art & Gardens.
She dressed as a banana last Halloween, her favorite holiday.
The Jacksonville Country Day School sixth-grader died at home on Christmas Day with her big stuffed kitty and the blanket that swaddled her as a newborn in the crook of her arm.
So inspiring was her story that she received 107 messages of condolence on a tribute page.
"She lived every day to its fullest," said her father, Nick Kavalieros. "She was passionate about the way she lived."
The Jacksonville native was diagnosed in May 2010 with Diffuse Intrinsic Pontine Glioma, an inoperable brain tumor and deadly pediatric cancer. There is no cure.
After agreeing to the vaccine trial designed to stimulate her immune system, Ellie and her parents made about 13 trips to Pittsburgh for the experimental vaccine. Most people with the disease live nine months, said Kavalieros, adding that she lasted longer than the 14 or so others in the trial.
"She fought for 19 months and largely because she did love life so much," he said. "A lot of the reason she lived as long as she did and fought as long as she did is that she looked past all the deficits, the pain and the frustration that this horrific disease gives you and found laughter, love and that quality of life that she needed."
Her brain images became a major topic at pediatric brain conferences across the world because she was so unorthodox in how the disease affected her and how she fought it, he said.
She met celebrities, such as Tim Tebow and tennis player Roger Federer, and had a touching phone conversation with surfer Bethany Hamilton, who lost her arm to a shark and inspired Ellie in times of frustration, said her mother Lisa.
The "A" student also was an avid surfer and tennis player who enjoyed being outdoors and trying new things such as scuba diving or unusual cuisine. When her body stopped working, she met the challenge of being inside by turning to art.
It was difficult because she would breathe so hard and fast that her chest would heave up and down for days, Kavalieros said. A week before she died, she painted for hours at the kitchen table barely able to prop herself up.
The Kavalieroses said they are grateful for the care she received from pediatric oncologist Michael Joyce at Nemours Children's Clinic and the staff at Wolfson Children's Hospital, where she spent many weeks.
Friends and classmates raised money for the research fund through birthday parties, lemonade stands, cookie sales, a rock concert, a golf tournament, a haunted house designed by a Mayo surgeon who is their neighbor and a 150-mile bike ride made by a family friend in Massachusetts and 13 of his friends. Donations may be made to The Ellie Kavalieros DIPG Research Fund at Dana-Farber Cancer Institute,www.jimmyfund.kintera.org/Ellie-DIPG.
Other survivors include two younger sisters, Mila and Penelope, and grandparents Theodoros and Aphrodite Kavalieros and Jack and Rosemary Arnold of Jacksonville.
A celebration of her life will be at 2:30 p.m. Friday at Deerwood Country Club, 10239 Golf Club Drive.
For more on her life, visit www.caringbridge.org/visit/elliekavalieros. (You must be a registered user of Caring Bridge to see this page. It is free to register.)
She participated in a painful vaccine trial that she knew probably wouldn't save her but would provide valuable data for those diagnosed in the future.
She inspired events that brought in more than $350,000 for a research fund in her honor.
She did 100 paintings and had a show at the Cummer Gallery of Art & Gardens.
She dressed as a banana last Halloween, her favorite holiday.
The Jacksonville Country Day School sixth-grader died at home on Christmas Day with her big stuffed kitty and the blanket that swaddled her as a newborn in the crook of her arm.
So inspiring was her story that she received 107 messages of condolence on a tribute page.
"She lived every day to its fullest," said her father, Nick Kavalieros. "She was passionate about the way she lived."
The Jacksonville native was diagnosed in May 2010 with Diffuse Intrinsic Pontine Glioma, an inoperable brain tumor and deadly pediatric cancer. There is no cure.
After agreeing to the vaccine trial designed to stimulate her immune system, Ellie and her parents made about 13 trips to Pittsburgh for the experimental vaccine. Most people with the disease live nine months, said Kavalieros, adding that she lasted longer than the 14 or so others in the trial.
"She fought for 19 months and largely because she did love life so much," he said. "A lot of the reason she lived as long as she did and fought as long as she did is that she looked past all the deficits, the pain and the frustration that this horrific disease gives you and found laughter, love and that quality of life that she needed."
Her brain images became a major topic at pediatric brain conferences across the world because she was so unorthodox in how the disease affected her and how she fought it, he said.
She met celebrities, such as Tim Tebow and tennis player Roger Federer, and had a touching phone conversation with surfer Bethany Hamilton, who lost her arm to a shark and inspired Ellie in times of frustration, said her mother Lisa.
The "A" student also was an avid surfer and tennis player who enjoyed being outdoors and trying new things such as scuba diving or unusual cuisine. When her body stopped working, she met the challenge of being inside by turning to art.
It was difficult because she would breathe so hard and fast that her chest would heave up and down for days, Kavalieros said. A week before she died, she painted for hours at the kitchen table barely able to prop herself up.
The Kavalieroses said they are grateful for the care she received from pediatric oncologist Michael Joyce at Nemours Children's Clinic and the staff at Wolfson Children's Hospital, where she spent many weeks.
Friends and classmates raised money for the research fund through birthday parties, lemonade stands, cookie sales, a rock concert, a golf tournament, a haunted house designed by a Mayo surgeon who is their neighbor and a 150-mile bike ride made by a family friend in Massachusetts and 13 of his friends. Donations may be made to The Ellie Kavalieros DIPG Research Fund at Dana-Farber Cancer Institute,www.jimmyfund.kintera.org/Ellie-DIPG.
Other survivors include two younger sisters, Mila and Penelope, and grandparents Theodoros and Aphrodite Kavalieros and Jack and Rosemary Arnold of Jacksonville.
A celebration of her life will be at 2:30 p.m. Friday at Deerwood Country Club, 10239 Golf Club Drive.
For more on her life, visit www.caringbridge.org/visit/elliekavalieros. (You must be a registered user of Caring Bridge to see this page. It is free to register.)
Tuesday, December 20, 2011
Cristian Rivera Foundation December 2011 Newsletter
Monthly Newsletter December 2011
Greetings from the Cristian Rivera Foundation.
The holiday season is officially upon us and at this festive time of year, when asked what The Cristian Rivera Foundation's holiday wish is, founder John "Gungie" Rivera said "to cure DIPG once and for all." We are blessed with so many amazing supporters who share our passion for helping the 200 children who face a deadly DIPG tumor each year, and share our resolve that our wish will come true in our lifetime.
We are proud to have a new Committee Member come on board this month to help us make our dream a reality in 2012. Welcome aboard, Jaison Newring.
Jaison Newring is the Vice President of NYC Tastemakers, where he runs the company's nightclub division. Newring has brought his unique touch to nightlife events at some of the city's top hotspots, including Duvet, LQ and China Club. Newring is also the author of weekly music blog Waking Up Dreaming, which focuses on videos and content from emerging artists.
How can you help make this holiday miracle come true for young children and their families across the country?
Get Involved: The Cristian Rivera Foundation holds many fundraiser events throughout the year, including concerts, walk-athons and an annual gala. The first annual Cristian Rivera Foundation Paintball Tournament was held on Saturday, December 3, at NYC Paintball, 47-11 Van Dam Street in Long Island City , from 8am to 12 noon. We'd like to thank everyone who attended and congratulate the winners, Team AVS. 100% of the proceeds from the first annual Paintball Tournament went to the Cristian Rivera Foundation. Special thanks must go to Committee Member Robert Vazquez for organizing the event. Robert is celebrating his birthday this month, along with fellow Committee Members Anthony Mason, Jose Alberto "El Canario," Wiliam Pla, Rickie Ricardo and Elis Pacheco.
If you were unable to attend, you can still make a donation by visiting www.cristianriverafoundation.org and clicking the Donation tab. And please be sure to check our website, as well as our Facebook page www.facebook.com/cristianriverafoundation and our Twitter feed @TweetCRF in the New Year as more fun and exciting events are being planned, all with the goal of raising money toward finding a cure.
Satisfy Your Holiday Shopping List With Cristian Rivera Foundation Merchandise: The Cristian Rivera Foundation's first Merchandise Catalog is now available on our website. Click through to see all of the various items we have for sale, including our signature blue wristband and our new wristband with white lettering, two types of t-shirts, and necklaces and brown beaded bracelets with your choice of a brass or silver charm. Visit www.cristianriverafoundation.org and click the Shop Tab to make a purchase online.
Remember that the Cristian Rivera Foundation is a 501(c)(3) and all donations made to the foundation are tax deductible. Your donations go toward helping DIPG families in need and funding important research and clinic al trials by doctors and medical facilities at the forefront of DIPG research. The Cristian Rivera Foundation donated $100,000 at the Third Annual Gala to Dr. Mark Souweidane, a neurosurgeon at Memorial Sloan Kettering and the Director of the Weill Cornell Pediatric Brain and Spine Center. Starting in 2012, we will also begin supporting the research of Dr. Oren Becher from the Duke Department of Pediatrics, who has been doing mouse model work and studying tumor tissue to learn more about DIPG tumors. In particular, Dr. Becher is studying Cristian's tumor tissue, donated after he passed away. According to Dr. Becher, Cristian's tumor tissue has been the most helpful in helping scientists learn all there is to know about DIPG tumors.
We received the great news on Thanksgiving that Dr. Souweidane received approval from Memorial Sloan Kettering for his pioneering clinical trial into the innovative use of convection-enhanced delivery (CED) to administer radio immunotherapy. He is well on his way to starting his trial and bringing us ever closer to finding a cure.
Unfortunately, with every piece of good news about developments in DIPG research we must also face the devastating news of lives being taken too soon by this terrible disease. With great sadness, the Cristian Rivera Foundation announced that Heaven gained another DIPG Angel on Thursday November 17. Jordan Malave passed away at 6:30 that Thursday morning, bringing to an end his three-year battle with DIPG. He fought for an exceptionally long time and showed incredible bravery and strength in the face of this dreadful disease. John "Gungie" Rivera and the entire Cristian Rivera Foundation extend their sincerest condolences to Jordan 's parents, Leeana Castro and Jayson Malave, and his entire family.
The Cristian Rivera Foundation started a DIPG Angels page on our website, http://cristianriverafoundation.org/dipgka.html, to honor all of the children whose lives have been lost to DIPG. We sent out an email to the Yahoo and Google DIPG groups inviting parents to participate in the page as a tribute to their child who fought so hard and so bravely. The Cristian Rivera Foundation’s DIPG Angels page features photos of the children, which link back to their individual CaringBridge or foundation page. Any DIPG parents who would like their child included on this page can email John “Gungie” Rivera at gungie@cristianriverafoundation.org.
With every beautiful child who passes away, we are reminded how horrible DIPG is and why it needs to be cured within our lifetime. So this holiday season, think of the Cristian Rivera Foundation, Jordan Malave, all of the DIPG Angels who suffered so needlessly at such a young age, and all of the children and families fighting every day to beat this terrible monster. Share your family's blessings with those in need by purchasing Cristian Rivera Foundation merchandise or making a donation at our website,www.cristianriverafoundation.org, or by mail via check made out to The Cristian Rivera Foundation.
Please note that our address has changed and mail all correspondences to:The Cristian Rivera Foundation
40 West 37th Street, Suite 402
New York, NY 10018
Our phone number remains the same at 212-779-2222.
We want to take this time to thank each and every member of the Cristian Rivera Foundation family for your love and dedication to this incredible cause. We wish you and your family only the best this holiday season and look forward to your continued support in 2012.
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.
Monday, December 19, 2011
Michelle Monje '98
Vassar alumna Michelle Monje '98 talks about her work as a pediatric oncologist and her groundbreaking research on diffuse intrinsic pontine glioma, a highly aggressive pediatric brain tumor.
Brain Stem Glioma Research
Dr. Michael Prados of the University of California, San Francisco
talks about advances in brain stem glioma research.
Sunday, December 18, 2011
Happy Holidays from the Cristian Rivera Foundation
We at the Cristian Rivera Foundation extend the warmest of holiday greetings to our friends, family and supporters. Thank you for the generosity and care you've shown throughout the year, whether it be through making donations, attending our events, or even just wearing our wristband every day and educating your loved ones about our cause. You have made an amazing contribution to the fight against DIPG and we look forward to taking the fight even further in 2012. We would also like to extend a special greeting to all of the brave DIPG families. Whether your child has already earned their wings or your family is still in the midst of this devastating struggle, we want to thank you for inspiring us and showing us all the true meaning of love, bravery and courage. You are all in our thoughts this holiday season.
Foundation Battles To Fight Brain Tumor In Paintball Tourney
A group of paintballers came together in Queens on Saturday with a mission to remember a little boy who lost his life to a rare illness.Cristian Rivera died in 2009 from pontine glioma, a brain stem tumor which strikes up to 300 children per year in North America and has no cure.
The foundation named in Rivera’s honor held a paintball tournament to raise money to fight the disease in Long Island City.
“We do six to seven annual events a year and the goal is to try to raise funds for the clinical trials, awareness, and support families who are currently dealing with the disease,” Ridgewood resident Ralph Mercado said.
Eleven teams raised more $4,000.
Saturday, December 17, 2011
The Cristian Rivera Foundation Hosts Successful First Annual Paintball Tournament
The Cristian Rivera Foundation gathered supporters, Committee Members and paintball lovers alike for the foundation's First Annual Paintball Tournament. Teams competed from 8am to 12 noon at NYC Paintball in Long Island City on Saturday December 3. It was a morning filled with high-energy but good-spirited competition. The main goal was not to win—though victory was certainly sweet for winners Team AVS. The true goal of the day was to raise money toward finding a cure for DIPG, a rare, inoperable brain stem tumor that takes the lives of 200 children in the United States each year. All of the proceeds from the First Annual Cristian Rivera Foundation Paintball Tournament went toward that goal. If you missed this amazing event, visit www.cristianriverafoundation.org where new events are being announced all the time. You can also use that link to make a donation and help find a cure for DIPG.
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