John "Gungie" Rivera to Appear On Channel 4, NBC's Visiones with Lynda Baquero

The Cristian Rivera Foundation Monthly Newsletter May 2010

Monthly Newsletter May 2010

Greetings from the Cristian Rivera Foundation.

The West Side Highway is getting a little more scenic for the month of May. The next time you drive past 132nd Street, look up. A 68x20 billboard facing south on the north side of the highway will be displaying a familiar cause---ours.

The Cristian Rivera Foundation has purchased this billboard space for one month beginning Monday, May 10. The billboard appears in Cristian's favorite color blue and sports a picture of Cristian, our Foundation website and the slogan "Help our kids. Let's find a cure for Pontine Glioma." Talk about a talking point! Make sure to point the billboard out to everyone in your car as you pass by and direct them to our website, http://www.cristianriverafoundation.org/, where they can learn about the disease, see news and photos, and even buy a Cristian Rivera Foundation wristband.

Be on the lookout this Monday, May 10. The Cristian Rivera Foundation billboard is coming, full steam ahead.

Having Cristian smiling down on so many people as they drive along the West Side Highway has made Committee Member Kenya Bradix remember some of the great times he had with Cristian Rivera:

"One of my funniest memories of Cristian is the day I brought Cris home after having spent a nice day with his dad, John. Cristian's dad had brought him an ice cream cone to eat on the way home. Now mind you, I'd just cleaned the car inside and out. Anyway, I'm stopped at a traffic light and Cris is pretty quiet, for the most part because he was eating his ice cream. Or so I thought. I finally got around to the front of his building to drop him off and I felt something cold and wet soaking through my jacket and shirt. I stepped out of the car to see what it was and, sure enough, Cris quietly dropped his cone down the front seat---"the driver's seat." I looked at Cris in the back seat and he had the biggest smile. I asked him why he did that and his reply was, "I didn't want it anymore." Needless to say, me knowing Cris the way that I do, I could only stay mad for about 13 or 14 seconds before I fell out laughing because the answer was so funny and unexpected."

Committee Member Pablo Diaz also put his memories of Cristian down on paper. Here's what he had to say:

"Cristian Rivera: there are not enough adjectives to describe him. He was a charismatic boy who made his presence felt when he entered a room. I know I sound like I am describing a grown person, but this was just a little boy who lit up a room when he entered it and commanded attention. Cristian's smile was so contagious that he could make you do anything he would ask by just smiling. There were so many moments that we shared in such a short time. How do you focus on just one? From the day I knew he was in his mom's belly to the days when his dad would bring him to the office, we had a bond. I discovered very quickly that he had a great sense of humor and liked playing pranks. He got a real kick out of giving me a hard time, but that was also his charm. I also quickly discovered how smart he was and that he had a real passion for trains, specifically Thomas trains. He would name all the characters and train parts from memory. He knew how to find rare Thomas trains and order them on eBay and other search engines. I spent many hours in front of the computer with Cristian on my lap as we would go on Google and eBay and negotiate for the rarest Thomas trains. It seems so unfair to get to know Cristian and have to lose him so shortly after. His memory, and the unconditional love that he blessed me with, will be with me forever. My reason for being a Committee Member of his Foundation is to find a cure for Pontine Glioma. I want to give children a fighting chance to conquer this monster. No more families should have to suffer in losing wonderful, charismatic, dynamic and loving little boys like Cristian Rivera. Love you Cristian."

If you have stories to share about your memories of Cristian, ways you're getting the word out about this Foundation, or your feelings about our quest to cure Pontine Glioma, we'd love to hear from you. You could be featured in an upcoming newsletter.

As always, we thank you for the hard work and dedication you've given this Foundation. We encourage you to continue to spread the word, wear your Foundation wristband, and urge your family and friends to make a tax-deductible donation toward curing Pontine Glioma.

Sincerely, John "Gungie" Rivera, "Forever Cristian's Daddy," and all of the members of the Cristian Rivera Committee: Alex Aviles, Andy Epstein, Ann Lee Caceres, Anthony Mason, Bill Marin, Boy Wonder, David Maldonado, Denise Miranda, DJ Camilo, DJ Funkmaster Flex, DJ Tedsmooth, Dr. Ben Velazquez, Dr. Mary Saleeby, Edward Caban, Elis Pacheco, Fernando Ferrer, Hamlet Peralta, James Cruz, James R. Cotto, Jay Hernandez, Jay Marin, Jeff & Valerie Lavino, Jim Jones, Jimmy Rodriguez, J.I. Starr, John "Jellybean" Benitez, Jessy Terrero, Johnny Nunez, Jose Alberto "El Canario," Joseph Mbeh, Kamar De Los Reyes, Kenya Bradix, Khaliah Ali, Little Louie Vega, Maria Marin, Mark Rosner, Mathew "Mateo" Rajkumar, Melissa Chung, Miriam Colon, Murray Richman, Pablo Diaz, Ralph Mercado III, Ray Wong, Ricardo Cardona, Solange Osorio, Steve Cox, Ulysses Terrero, Vic Latino, Victor Martinez and William Pla.



Miriam Colon and Khaliah Ali Join the Cristian Rivera Foundation Committee

The Cristian Rivera Foundation welcomed two new members to its high-profile Committee actress Miriam Colon and Khaliah Ali, daughter of Mohammad Ali. Colon is a veteran of stage and screen, having appeared in Scarface, All the Pretty Horses, soap opera Guiding Light and HBO’s How to Make it in America. She is also the founder, artistic director and head of the board of directors at Manhattan’s Puerto Rican Traveling Theater. Ali is more than just the child of a sports icon. She’s a fashion designer, former Ford model, and Emmy Award-nominated talk show host. Ali wrote Fighting Weight, a book about her quest for the perfect weight through gastric lap band surgery, and helps others going through the same thing as the spokesperson for New Jersey’s Banding Centers of America.

Cristian Rivera Foundation to Appear on West Side Highway Billboard

The Cristian Rivera Foundation is taking its fight to the streets. The New York-based 501(c)(3) not-for-profit organization will be appearing on a 68x20 billboard, facing south on the north side of the West Side Highway and 132nd Street in Manhattan, for one month beginning May 10, 2010.

Renowned NYC event promoter John "Gungie" Rivera created the Foundation in July 2009 to find a cure for Pontine Glioma, the rare pediatric brain stem tumor that claimed the life of his six-year-old son. Generally, this inoperable tumor affects children between the ages of 1

and 9, with the average lifespan of a child after diagnosis falling between three and 18 months. Only 300 cases of Pontine Glioma are discovered in the United States each year, and the Cristian Rivera Foundation strives to improve the lives of children and families dealing with the disease through awareness and clinical research program funding.

With prominent placement of this billboard, the Cristian Rivera Foundation hopes to invite scores of New York City residents and visitors to log onto the website, learn about Pontine Glioma, make a donation or purchase one of the Foundation's signature blue wristbands to symbolize their support of the cause.

As the billboard says, "Help our kids. Let's find a cure for Pontine Glioma."

The Cristian Rivera Foundation Monthly Newsletter April 2010

Monthly Newsletter April 2010

Greetings from the Cristian Rivera Foundation.

Spring is the time when flowers bloom and gardens grow, so it's only fitting that we have something growing too-our Committee. This month, the Cristian Rivera Foundation welcomed two new Committee Members to our close-knit team:

Khaliah Ali is an Emmy Award-nominated talk show host, former Ford model and fashion designer. The daughter of Muhammad Ali is also an author. Her book Fighting Weight chronicles her quest for the perfect weight through gastric banding surgery and the positive affect her weight loss has had on her life. Khaliah has been named the spokesperson for New Jersey's Banding Centers of America, which supports patients that have undergone gastric lap band surgery, by providing gastric band adjustments, education and more.

Miriam Colon is a veteran of stage and screen. This Puerto Rican-born actress made her acting debut in 1953 and has played many memorable characters throughout her multi-decade career. She appeared in such feature films as Scarface, All the Pretty Horses and Goal!, as well as on Guiding Light and, most recently, HBO's How to Make it in America. Perhaps the venture she's most proud of is the Puerto Rican Traveling Theater. Miriam founded the theater, where she serves as President, Artistic Director and head of the Board of Directors. Located at 304 West 47th Street in Midtown Manhattan, the Puerto Rican Traveling Theater puts on significant works of Hispanic playwrights and offers seasonal workshops in many theatrical disciplines.

While we are delighted to welcome Miriam and Khaliah to the Cristian Rivera Foundation Family, we also want to acknowledge the great work done by everyone involved in the Foundation. Our Wristband Project continues to be a great success. Participants get 10 wristbands, along with all the materials needed to teach people about our mission. All you have to do is sell the wristbands and send us a check for the money you've raised. To get involved, email wristbandproject@cristianriverafoundation.org or call 212-779-2222.

To offer some insight into the Cristian Rivera Foundation's goals and why they are so important, Committee Member Ben Velazquez graciously wrote the following editorial:

I was reading a local paper when I decided to contact John Rivera and write this small piece for the newsletter.

On one page of the paper there was an article depicting a new medication for Arthritis and joint pain that had shown a significant decrease in inflammation and which was in huge demand all over the country.

The article on the opposite page was describing a new weight loss supplement that had shown very positive results in clinical trials and was flying off the shelves.

Please understand that I am not attempting to diminish the importance of these two medical issues as I believe that they both deserve to be studied and attacked with all the science and dedication necessary to provide those who need the help all that is possible.

It just raises a question about why virtually unknown, fatal systemic diseases such as Pontine Glioma don't get the attention and the funding necessary just because they don't provide the potential financial windfall that these other topics do.

There is some very exciting science with some of the smartest people at the forefront that could provide answers to helping the children afflicted with fatal conditions such as Pontine Glioma.

One example is the work being done in the field of energy medicine.

Scientists are using different modalities in order to supply the brain with negative ions and/or specific frequency protocols intended to stop the rapid cellular growth. Cancer cells divide and multiply rapidly in the brain. These cancer cells carry special types of electrically-charged elements that play a role during the cell division process. Other healthy cells in the brain multiply at a much slower rate, if at all, and thus rarely include the same electric properties as the dividing cancer cells. One such treatment involves using a device called the Novo TTF.

The NovoTTF-100A device used in this trial delivers very low intensity, alternating electric fields to the tumor site through the scalp. These fields are known as Tumor Treating Fields or TTFields. Due to the unique shape of cancer cells when they are multiplying, TTFields cause the building blocks of these cells to pile up in such a way that the cells physically break apart. In addition, cancer cells also contain miniature building blocks that move essential parts of the cells from place to place during division. TTFields cause these building blocks to fall apart since they have a special type of electric charge. As a result of these two effects, preliminary study data indicates that cancer tumor growth is slowed and may even reverse after continuous exposure to TTFields. Preliminary data also indicates that the TTFields affect the healthy brain cells much less than cancer cells since healthy brain cells multiply at a much slower rate, if at all. Another treatment protocol involves using Frequency specific microcurrent protocols, which deliver very high frequency at an ultra low current that is intended to reprogram the cells to communicate and initiate the healing process themselves.

While these sciences and their respective trials show promise in dealing with conditions such as Pontine Glioma, the business of medicine denies the powers that be the incentive necessary to put more dollars behind the research, development and care.

Awareness should remain the goal of everyone involved in this foundation.

The collective concern will always drive the marketing machine whose primary goal is to create revenue.

Keep the conversation going.
Ben Velazquez

As important as it is to remember that Pontine Glioma is a deadly disease that needs to be cured, we also can't forget that it's the people affected by Pontine Glioma who matter most. Not just those young children afflicted with the disease, but their friends and families who have to watch loved ones suffer and continue to get through life after their nearest and dearest have passed on. Committee Member Solange Osorio offered her memories of Cristian Rivera and how much of an impact he made in her life.

"My Memories With The Little Engine That Could"

There are things in life that happen to us when we least expect them to. Amongst those things are the times we meet those who later become inspirations in our lives and imprints in our hearts. In my case, it came in the shape of a little boy. His name: Cristian.

I can still recall the day in Mid-August of 2007 when Cristian had already been diagnosed with Pontine Glioma. He was happy as can be, standing on top of an office chair. Cristian looked up at me and gave me half a smile and quickly proceeded to do what was bringing him joy, playing a "Go Diego, GO" CD on his daddy's radio. I instantly knew that Cristian was special. I instantly knew that Cristian would grow up to become a leader (a GREAT one at that). He knew what he wanted and he definitely knew how to get it.

I was blessed to have been able to spend time with him as the months went by. There were times when I would massage him so that he could go to sleep, and remember touching his head and wishing that I could make him all better. I think that feeling not only came from not wanting him to suffer but also from being a mother myself. Cristian loved being massaged on his back and his underarms, and just when I thought that Cristian was sleeping, he would open his eyes, lift his head and tell me not to stop. I also remember trips to the candy store. Cristian would get a baggy and he or his daddy would fill it up with sugar-free candy. My daughter Sharon was a year younger than Cris. She loved to play with him and she was even happier to be bossed around by him. I knew Cristian loved her because he would always ask me for "Shari" when she wasn't with me. And, he always had that "smile" in his face whenever he would tell her what to do.

Wow!! So many wonderful memories are coming back to me, as I write this. Cristian would also say to Shari, "Sharing is Caring"-we would laugh because when it was his turn to hand over the ducky the same rule didn't apply. There are knock knock jokes, trips to FAO Schwartz, Build a Bear, Carmine's and the Bronx Zoo that were all first-time trips for both Shari and I that we will always remember.

So many memories; so many smiles and laughs. How can I possibly forget? It was so hard to see Cristian in the hospital not being able to move, speak, laugh, play and do all those things that 6 year olds are supposed to do. It was so hard to see such a beautiful, loving and caring boy suffer so much and never complain. EVER.

The morning of Cristian's passing was one that I never imagined would come. It was one that never crossed my mind. In my world, I never gave up hope or faith. I always truly believed that this was a dream that would come to pass. Cristian touched me. I carry him in my prayers, always. There's never a time when I don't think of what could have been if he was still physically here with us all.

I feel the tears form in my eyes when I think of Cristian's voice, one that I would never hear again. Both Cris and I were sitting in the back of his daddy's car. As his daddy was driving, Cris and I were holding hands and he looked up at me, took a deep breath and sweetly said, "I Love You"-That would be the last "I Love You" from Cris to me.

So, I go on living life, proud to wear my royal blue wristband, proud to be a committee member, proud of all of the things that Cristian's daddy is doing for this amazing cause and in memory and honor of his son, proud to hand out Cristian Rivera Foundation cards as much as possible, proud to share some of my memories, and proud to spread the word and to know that I truly believe in this foundation. But, most importantly, I carry "The Little Engine That Could"-Cristian Alexander Rivera-in my heart.

Solange Osorio
Proud committee member of The Cristian Rivera Foundation

It's vital that you do your part to help us find a cure for Pontine Glioma and make sure no family has to go through the pain and suffering associated with it. There is strength in numbers and it is only together that we can beat the odds and rid the world of this terrible disease. Feel free to share your thoughts about Cristian, or let us know what you're doing to teach people about Pontine Glioma and motivate them to donate to our cause. You might end up in a future Cristian Rivera Foundation Newsletter too.

Full Steam Ahead!

Sincerely,
John "Gungie" Rivera, "Forever Cristian's Daddy," and all of the members of the Cristian Rivera Committee: Alex Aviles, Andy Epstein, Ann Lee Caceres, Anthony Mason, Bill Marin, Boy Wonder, David Maldonado, Denise Miranda, DJ Camilo, DJ Funkmaster Flex, DJ Tedsmooth, Dr. Ben Velazquez, Dr. Mary Saleeby, Edward Caban, Elis Pacheco, Fernando Ferrer, Hamlet Peralta, James Cruz, James R. Cotto, Jay Hernandez, Jay Marin, Jeff & Valerie Lavino, Jim Jones, Jimmy Rodriguez, J.I. Starr, John "Jellybean" Benitez, Jessy Terrero, Johnny Nunez, Jose Alberto "El Canario," Joseph Mbeh, Kamar De Los Reyes, Kenya Bradix, Khaliah Ali, Little Louie Vega, Maria Marin, Mark Rosner, Mathew "Mateo" Rajkumar, Melissa Chung, Miriam Colon, Murray Richman, Pablo Diaz, Ralph Mercado III, Ray Wong, Ricardo Cardona, Solange Osorio, Steve Cox, Ulysses Terrero, Vic Latino, Victor Martinez and William Pla.

The Cristian Rivera Foundation Launches Monthly Newsletter

Monthly Newsletter March 2010

Welcome to the first Cristian Rivera Foundation newsletter. As a valued member of the Cristian Rivera Foundation family, we want to keep you informed each month about everything going on with the Foundation and with the latest advances in medicine that will help realize our dream of a world without Pontine Glioma.

What is Pontine Glioma? It's a rare, inoperable brain stem tumor that predominantly affects children between the ages of 1 1/2 and 10. Only 300 cases are discovered in the United States each year and because there is no cure, its young victims only have 3-18 months to live after they've been diagnosed.

It is thanks to you that 2009 was a successful first year for the Cristian Rivera Foundation. We officially launched in July and went live with our website in August. As you remember, we held our first fundraiser gala on September 29 at Eden, which was also the site of Cristian's memorable fifth birthday. We were touched by everyone who came and donated and showed their support. Pictures and video from the event are available at http://cristianriverafoundation.org/, as well as http://cristian-rivera.com/. You can also see an updated gallery of celebrities sporting the Cristian Rivera Foundation wristband, as well as some of Cristian's original artwork.

All of your hard work is only going to make 2010 a stronger and more fruitful year for the Cristian Rivera Foundation. Our billboard will debut on the West Side Highway in late spring/early summer, and a second gala will once again celebrate Cristian's life around the same time. We will certainly keep you posted as dates, locations and special guests are announced.

Our quest toward finding a cure has also led us to Dr. Mark Souweidane, one of the doctors who conducted various shunt surgeries on Cristian. Dr. Souweidane is the Vice Chairman of the Department of Neurological Surgery and the Director of Pediatric Neurological Surgery at the Weill Medical College of Cornell University and Memorial Sloan-Kettering Cancer Center. He has dedicated himself to researching these brain tumors and he thinks he has had a breakthrough testing new delivery methods on animals. Dr. Souweidane has many foundations and private donors contributing money to take his research to the next stage: testing on humans.

The Cristian Rivera Foundation is proud to be one of the foundations supporting Dr. Souweidane's research. But we can't make a difference without your help. All of the members of the Cristian Rivera Foundation Committee ask you to visit our website, http://cristianriverafoundation.org/, and make a tax-deductible donation. Pass this newsletter on to your friends, family and colleagues so that they too can get involved.

Another way you can help is to purchase a Cristian Rivera Foundation wristband and wear it to show your support. You'll be in good company. Committee Member DJ Tedsmooth wore his wristband on Good Day New York. Committee Member and Celebrity Chef Ricardo Cardona, along with Committee Member Solange Osorio, wore it for TV interviews on Univision and the Food Network. Committee Member DJ Camilo wears his wristband every day and at all his appearances. So do Committee Members Steve Cox, Pablo Diaz, Kenya Bradix, Victor Martinez, Alex Aviles, Ralph Mercado III and Dr. Ben Velazquez. Celebrities have also been spotted wearing the Cristian Rivera Wristband, like P.Diddy, Kid Capri, model/actress Bobbi Jo, Dina Manzo from The Real Housewives of New Jersey, Juelz Santana and Khaliah Ali, daughter of Muhammed Ali.

We also invite you to become part of our Wristband Project. We give you 10 wristbands to sell and you mail a check for the proceeds to the Cristian Rivera Foundation. Many people have gotten involved in the project and it has proved to be an effective method of raising both awareness and funds. To get involved, email wristbandproject@cristianriverafoundation.org or call 212-779-2222.

Without dedicated people like you, we would not be able to achieve all we have done so far and all we will do in the future. Thank you again and may 2010 be the year we say goodbye forever to Pontine Glioma.

Sincerely,

John "Gungie" Rivera, "Forever Cristian's Daddy", and all of the members of the Cristian Rivera Committee: Alex Aviles, Andy Epstein, Ann Lee Caceres, Anthony Mason, Bill Marin, Boy Wonder, David Maldonado, Denise Miranda, DJ Camilo, DJ Funkmaster Flex, DJ Tedsmooth, Dr. Ben Velazquez, Dr. Mary Saleeby, Edward Caban, Elis Pacheco, Fernando Ferrer, Hamlet Peralta, James Cruz, James R. Cotto, Jay Hernandez, Jay Marin, Jeff & Valerie Lavino, Jim Jones, Jimmy Rodriguez, J.I. Starr, John "Jellybean" Benitez, Jessy Terrero, Johnny Nunez, Jose Alberto "El Canario," Joseph Mbeh, Kamar De Los Reyes, Kenya Bradix, Little Louie Vega, Maria Marin, Mark Rosner, Mathew "Mateo" Rajkumar, Melissa Chung, Murray Richman, Pablo Diaz, Ralph Mercado III, Ray Wong, Ricardo Cardona, Solange Osorio, Steve Cox, Ulysses Terrero, Vic Latino, Victor Martinez and William Pla.

Cristian Rivera Foundation Featured in Life & Style Magazine

The Cristian Rivera Foundation made the pages of Life & Style magazine. The publication’s latest issue features a photo of P. Diddy showing off the Cristian Rivera Foundation wristband he was seen wearing at New York nightclub Duvet, as well as information about the Foundation’s mission to help children with Pontine Glioma.

From the article:

“What the Stars are... Doing for Charity

DIDDY gives back by wearing a Cristian Rivera Foun-

dation bracelet, which supports kids diagnosed with

Pontine Glioma, a rare, inoperable brain disease
(CristianRiveraFoundation.org).”