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.
Happy holidays from the Cristian Rivera Foundation! 
Model/TV personality Stephanie Carrera is the host of "IviveH2O Your Hispanic Obsession," as well as "TV Exclusive" with renowned animator David Marin. Carrera has interviewed several actors, singers and community opinion leaders over the years, including Carlos Ponce, Jose Guzman, John Leguizamo, Bachata Heights, Double T and Crock, Nina Sky, Aventura team members and many more. Besides being a presenter and model, Stephanie has also appeared in commercials and music videos. She has served as an emcee at various events, as well as an ambassador for Coalicion Latinoamericana Internacional. We are proud to have Stephanie Carrera join the Cristian Rivera Foundation family and we look forward to working with her and all of our cherished Committee Members to rid the world of DIPG once and for all.
Tony Ferrara is the Finance Manager at Koeppel Nissan in Jackson Heights, New York. Following his graduation from Bayside High School in Queens, Ferrara began his career at Koeppel Nissan, starting out in the parts department. He received a variety of promotions over the years, working through almost all functions of the dealership. Twenty five years later, Ferrara is in charge expediting paperwork and generating loans, acting as the mediator between the banks and the customers.
