Researchers at Stanford University and the University of California at San Francisco receive prestigious awards to examine childhood cancers

Wynnewood, PA (December 2011) – Alex's Lemonade Stand Foundation for Childhood Cancer (ALSF) today announced the recipients of the 'A' Award, a groundbreaking pediatric cancer research grant designed to jumpstart the careers of promising scientists in the pediatric cancer field. Michelle Monje, MD, PhD of Stanford University and William Gustafson, MD, PhD of the University of California at San Francisco were chosen from nearly 30 applicants as the 2011 recipients of the grant which totals $375,000 over the course of three years. Dr. Monje's research will target Diffuse Intrinsic Pontine Glioma (DIPG) while Dr. Gustafson will examine neuroblastoma.

The 'A' Award joined a prestigious line of medical and nursing grants from Alex's Lemonade Stand Foundation in 2009. The award was created in an effort to find the best and brightest young researchers and encourage them to build life-long careers in the pediatric cancer field. The Foundation believes that young researchers are integral components of finding new treatments and cures, and by providing support for their research these investigators will utilize their talents toward pediatric oncology.

Dr. Monje, an Assistant Professor of Neurology and Neuro-Oncology at Stanford University, will focus her research on DIPG, a highly aggressive and difficult to treat brain tumor. DIPG is the second most common malignant brain tumor in children and the leading cause of pediatric cancer death with a survival time after diagnosis of less than a year. Monje and her team have developed the first published experimental model system to study DIPG and have thus discovered molecular factors that drive tumor growth. Now, they will use this experimental model system to test therapeutic strategies combining two drugs to target both the cells responsible for tumor initiation and those responsible for tumor expansion. If successful, Monje would seek to translate her findings into a clinical trial for children battling DIPG.

Dr. Gustafson will examine high-risk MYCN amplified neuroblastoma, a deadly form of childhood cancer which frequently becomes resistant to chemotherapy and radiation. In his research, Dr. Gustafson will develop models of this high-risk disease for pre-clinical testing, and he will utilize cutting-edge chemistry to direct targeted therapy against the Aurora A protein, known to be critically important both in driving cell growth and in maintaining high MYCN levels. Through these studies, Dr. Gustafson will ultimately work toward novel and clinically tolerable therapies which target drug-resistant neuroblastoma.

Along with the funds provided to 'A' Award recipients, the award will also include access to ALSF's Scientific Advisory Board for periodic consultation and a choice of reference books to enhance the researcher's personal pediatric oncology library. New in 2011, the Foundation will also give recipients the choice of equipment to aid in their research (up to $10,000 value), funding to attend one medical conference of their choice and the opportunity to meet other 'A' Award recipients to collaborate and share ideas.

The 'A' Award will mark the final grants allocated from Alex's Lemonade Stand Foundation for 2011. However, the Foundation will begin accepting applications for its newly announced Bridge Grant program for NIH childhood cancer research applications that received excellent scores but did not receive funding on December 15, 2011. In an effort to keep the projects of these researchers on track while they reapply for funding, ALSF's Bridge Grant will provide $100,000 over a 12 month period. Applications will be taken on a rolling review basis with a deadline of January 9, 2012 or until capacity is reached. A total of three grants will be funded in this cycle, with a second cycle planned for the summer of 2012.

For more information on the 'A' Award, Bridge Grants or Alex's Lemonade Stand Foundation's grant program, visit: www.ALSFGrants.org.

Alex's Lemonade Stand Foundation 2011 'A' Award Recipients

Michelle Monje, MD, PhD, Stanford University, Palo Alto, CA

A Combinatorial Approach to Target the Tumor-Initiating and Transit Amplifying Cellular Subpopulations in Diffuse Intrinsic Pontine Glioma (DIPG)

Diffuse Intrinsic Pontine Glioma (DIPG) is the second most common malignant brain tumor in children and the leading cause of pediatric cancer death. We have developed the first published experimental model system to study DIPG, and using this have discovered some of the molecular factors that drive DIPG tumor growth. We now propose to use our mouse model system to test a therapeutic strategy combining two drugs. The purpose of this proposal is to develop a strategy that will target two types of cells in the tumor - those responsible for tumor initiation, and a distinct population responsible for tumor expansion. If efficacious, we would seek to translate the findings quickly to a clinical trial for children suffering from DIPG.

William Gustafson, MD, PhD, University of California San Francisco, San Francisco, CA

Blockade of p53 and Aurora A in Therapy Resistant Neuroblastoma

High-risk MYCN-amplified neuroblastoma is typically responsive to therapy at diagnosis, becoming resistant to chemotherapy/radiation at relapse. Mirroring human disease, the well established TH-MYCN model of neuroblastoma, developed in our lab, is responsive to conventional chemotherapy. To cure MYCN-amplified high-risk neuroblastoma, we propose to: 1) Develop models which accurately reflect the genetics and behavior of relapsed, chemotherapy refractory disease. I have developed a drug-resistant version of the TH-MYCN model by crossing it with models defective in p53, leading to a defective response to chemotherapy, and mirroring a similar defect in resistant childhood disease. I plan to characterize the response of this model to conventional chemotherapy as well as novel, targeted therapies including those subsequently described. 2) Development of novel and clinically tolerable therapies which target drug-resistant neuroblastoma. I propose to use cutting-edge chemistry to direct targeted therapy against the Aurora A protein, known to be critically important both in driving cell growth, and in maintaining high MYCN levels. I have already generated a new class of Aurora A inhibitors which block both Aurora functions (current drugs only block cell growth) which we predict will have improved activity against MYCN amplified neuroblastoma.

Samuel Tyler Kidd

Monday January, 9 2012 was a sad day for the entire DIPG community as Heaven gained another DIPG Angel. Eleven-year-old Samuel Tyler Kidd lost his battle with DIPG at 9:30 that morning. His parents, Mark and Mindy, will always remember him as vibrant, fun-loving, caring little boy. He had a huge heart of pure gold and always smiled no matter what. Tyler put up a brave fight against DIPG and was an example of incredible courage and strength. The Cristian Rivera Foundation extends our sincerest sympathy and condolences at what is surely an unimaginably difficult time for Tyler's family and friends. Samuel Tyler Kidd will always stay in our thoughts and prayers.

Cristian Rivera Foundation Committee Member Solange Osorio

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.

Javier "Buji" Villamil

Wednesday, January 4, 2012 marked two years since DIPG took the life of an 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.

Written by: Dr. Loice Swisher

Dr Loice Swisher whose daughter Tori is a ten year medulloblastoma survivor.  Loice is an FDA Patient Representative and emergency medicine physician. She is pictured here on a family vacation in Utah.

“It's been almost two years since Sam was diagnosed in December 2006. The only improvement that I've seen during this time is that we have this wonderful site!” [the DIPG Internet Yahoo support list and discussion group]

So said “Sheila” (in December 2008), whose young grandson had died in February 2008 from a diffuse intrinsic pontine glioma.

A diffuse intrinsic pontine glioma, known as DIPG, is perhaps the most feared pediatric brain tumor because of the dismal survival statistics and devastating clinical course. This tumor tends to strike four to ten year olds with approximately half of these young children dying in the first year and 80-90% by the end of the second.

Despite more than 200 trials, no treatment has been found to be effective for long term survival in DIPG. For some children, steroids and radiation allow for a ‘honeymoon’ with relief of symptoms. But this is often followed by a relentless advancing of the disease and tragically, death months later.



Basic science research into this tumor has been frustratingly difficult. A significant hurdle has been the lack of tumor tissue on which to carry out tests. 

In 1993, the standard of care for DIPG in the United States changed, as biopsy provided no improvement in survival over neuro-imaging in typical pediatric diffuse pontine tumors. Since that time, biopsies of pediatric DIPG have been uncommon resulting in the scarcity of tumor material for research. At the time “Sheila” wrote, there were no published reports on cell lines, no animal models and no molecular/genetic studies. 

The changes in the medical community’s approach to a disease are often evident much before the patient community is aware of them because the time from concept to study to publication of a research paper can take years. In 2008, change was beginning in DIPG research. The heart-wrenching post from grandmother “Sheila” launched an effort towards earlier awareness of research endeavors as well as international advocacy collaboration.

In 2005 the biopsy debate had heated up again. St Jude Children’s Research Hospital in Memphis, Tennessee (USA) responded with a concerted effort to approach families for post-mortem tumor donation for research resulting in more molecular information on DIPG. Since many children die at home, far from St Jude, the emotional and logistical challenges were numerous. 

A family responded to the financial issues raised by these challenges by establishing a foundation called Tyler’s Treehouse (established in 2006), specifically started to fund the logistical aspects of this study. 

Over the ensuing years, many families with DIPG children have provided the ultimate gift to the research community involved with these studies of their child’s tumour tissue. Some families as far away as Australia and South America have donated their child’s tissue. The St. Jude efforts haven’t lead to publication yet, however, The Hospital for Sick Children (“Sick Kids”) in Toronto, Canada published the first whole genomic analysis of DIPG tumors in February 2010.

Their French colleagues took a different approach, with a clinical trial including upfront stereotactic biopsy of pediatric DIPG. In the July 2007 issue of the Journal of Neurosurgery the surgical results were published. With 33 children there was no mortality and only two children had transient morbidity. 

The combined effect of the French stereotactic biopsy results and the molecular analysis studies from “Sick Kids” in Toronto has lead to renewed efforts for future clinical trials to include molecular analysis from stereotactic biopsy samples.

The development of animal models is also emerging.



At the 2008 ISPNO (International Symposium on Pediatric Neuro-Oncology) conference in Chicago (USA), Dr. Oren Becher won the best basic science presentation award for his genetically engineered mouse model of brainstem glioma. The excitement of potentially being able to study this tumor in a mouse model has resulted in requests for Dr Becher’s mice from several others interested in studying brainstem glioma.

For some time, the non-availability of resected tumor tissue for the development of cell lines has met with failure, even to the point of new researchers being discouraged from pursing this direction. 

In the summer of 2009, Stanford University in California revealed that Dr. Michelle Monje had been able to culture neurospheres from post-mortem pediatric DIPG tissue using a stem cell technique. This breakthrough in DIPG research at Stanford has lead to an EGFRviii vaccine being introduced to the pediatric brain tumor community for the first time as well as other research. Some of this has been funded through the Kyle O’Connell Foundation.

Truly exciting events have been two international meetings of researchers and clinicians to discuss DIPG. The Fondo Alicia Pueyo hosted the first conference in Barcelona, Spain in February 2009. The second event was hosted by The Hospital for Sick Children in Toronto with funding support by Just One More Day and B.R.A.I.N.child.

We are now seeing a change in DIPG research - and the international collaboration of parents, advocates, clinicians and researchers that is making this happen. 

Written by: Rachel Kirkpatrick, Editor

When Mikey Czech was diagnosed in January 2008 with a diffuse intrinsic pontine glioma (DIPG), a rare pediatric brain tumor, his parents Steve and Jennifer were told there was little that could be done.

Up until that point, doctors in the United States were hesitant, if not unwilling, to biopsy these brain tumors due to their locations in the brainstem and the perceived risks. Children with DIPGs were often diagnosed, went through intense, experimental chemotherapy or radiation, and they died, as Mikey did exactly nine months later at age 11.

At the foundation's fourth annual "Soaring Towards a Cure" gala on November 19, the Czechs announced that a major clinical trial is being launched in the U.S. that could provide more information than ever on the molecular makeup of these DIPG tumors and, in turn, the best way to treat them.

"This just goes to show you that when people get together, when you focus on something and are relentless in its pursuit, you can change anything," Steve told the Advertiser.

On a mission


DIPG is one of the most aggressive and deadliest forms of brain tumors diagnosed in children between the ages of three and 16, according to the foundation. DIPGs are inoperable, incurable and — until recently — unable to be biopsied. Approximately 80% of patients diagnosed with DIPGs die within one year of diagnosis; nearly 100% die within five years of diagnosis.

"Conventional treatment consists of general radiation and chemotherapy," according to the foundation. "Alternative treatments include various clinical trials (approximately 250 over the past 30 years) which, to date, have proven no more effective than conventional treatment."

Following Mikey's death, the Czechs identified the foremost expert in the world on DIPG, Dr. Mark W. Kieran of Harvard Medical School/Dana-Farber Cancer Institute ­— one of the five doctors they consulted following Mikey's diagnosis.

"We were very impressed with him," Czech said. "We went back to him and said, 'Look, everyone but you said this tumor was not biopsiable, why?'"

The Czechs learned that while neurosurgeons in the U.S. were not willing to do these biopsies, Parisian neurosurgeons are ­— and have, successfully. In fact, at that time the Czechs met with Kieran, the doctor told them there had been 20 biopsies taken of these tumors by French neurosurgeons and not one of them had a single complication.

With backing from the foundation, Kieran set out to convince 20 U.S. hospitals that this procedure was not as dangerous as had been believed.

"He convinced the neurosurgeons from 20 U.S. hospitals here with the Parisian neurosurgeons and said, look, here's the technique," Czech said. "And once they saw that technique, they said, 'You're right — we can do this.'" (A list of the participating U.S. hospitals is available at NCAdvertiser.com.)

Now, The Mikey Czech Foundation, in conjunction with six other foundations, is funding a new clinical trial which was approved on November 11, allowing these tumors to be biopsied in the United States for the first time. Participating foundations include: The Zach Carson DIPG Fund, The Ellie Kavalieros DIPG Fund, The Prayers From Maria Foundation, Children's Hospital of Los Angeles Imaging Center, The Pediatric Brain Tumor Research & Clinical Fund at Dana-Farber Cancer Institute, and Stop & Shop Pediatric Brain Tumor Research Fund.

A new laboratory

A second goal of the foundation is to establish a dedicated translational research laboratory where these tumors can be studied and remedies can be developed.

With the support of the aforementioned foundations, Kieran obtained the live tissue samples of the 20 biopsies from children in Paris and took them to the Broad Institute of Boston (a joint venture between Harvard Medical School and the Massachusetts Institute of Technology), where the tumor cells can be deciphered to identify their molecular make-up using the "latest and greatest" in nanotechnology and biomedical engineering, Czech said.

The Broad Institute has already identified 2,000-plus different mutations that cause cancers in general.

"We're going to launch this next phase, the U.S. phase of this," Czech said. "What's going to happen at these 20 centers where the kids get diagnosed is, the day they get diagnosed, they are going to get biopsied. Those live tissues will be flown to Broad and they're going to identify what the molecular markers are, what the mutations are, and compare them to the 'encyclopedia' of mutations that are already known in an effort to identify existing remedies that can be used to treat these DIPG tumors.

"The idea being that each one of these kids now, for the time, is going to have his or her own custom-made treatment, as opposed to just throwing everything at the wall and seeing what sticks," Czech said.

Just $700,000

In the two and a half years The Mikey Czech Foundation has been in existence it has raised more than $1.5 million in funding. As Czech points out, this has been accomplished at the grassroots level, with no corporate or government involvement.

"The extent to which people have reached out has been incredible," Czech said. "I always refer to New Canaan as my 18,000-person family, because of the way the community has embraced us. We'll always be grateful."

It has taken 10 years for researchers to get to this point and it was done, notably, with $700,000. Czech knows that with consistent funding and support, the possibilities are endless.

There are no pharmaceutical companies willing to write a big check for research — nor is the federal government — at least for now, because this cancer is so rare. So when Czech, a hedge-fund manager, raised his second fund, the $1.1 billion Czech Asset Management, LP, last year, he made a contractual commitment to donate a fixed percentage of his personal profit from the hedge-fund to The Mikey Czech Foundation.

"For the first time, there is a meaningful, sustainable source of funding for efforts solely directed toward pediatric brain tumors," Czech said. "And that's what it is going to take — there has to be a sustainable source to keep these people interested in researching it, but also to attract other researchers into the field."

Nearly four years since the loss of his only son, Czech is finding a comfortable balance in life.

"It's very simple: it's family, faith, foundation and the fund, and the fact of the matter is, the fund and foundation's success are very much aligned," Czech said.

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.

By Sandy Strickland

While 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.)

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.

Dr. Michael Prados of the University of California, San Francisco
talks about advances in brain stem glioma research.

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.

 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.

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.

Pictured Above From Left to Right:Cristian Rivera Foundation Founder John "Gungie" Rivera, Cristian Rivera Foundation Committee Member Chef Ricardo Cardona, Founder of the Mikey Czech Foundation Steve Czech, and The Winner of The Auction

The Cristian Rivera Foundation and Committee Member and Celebrity Chef Ricardo Cardona helped raise over $7500 at the 4th Annual "Moms for Mikey" event, held at The Woodway Country Club in Darien, CT in memory of DIPG Angel Mikey Czech. The Cristian Rivera Foundation donated an event package with Chef Cardona that was auctioned at the fundraiser gala on Saturday November 19. The lucky winner bid $7500 to have Chef Cardona come to their home and cook for 10 people. One server, food and wine was included in the winning bid. The Cristian Rivera Foundation also donated a baseball autographed by New York Yankees star Alex Rodriguez, which was auctioned off as part of a gift basket. We are proud of the work being done by the Mikey Czech Foundation and are happy to help in whatever way we can, so that together one day we can rid the world of DIPG once and for all.

The Cristian Rivera Foundation would like to wish everyone a very happy Thanksgiving. DIPG has taught us how important it is to appreciate those we love and we give thanks for those who are with us, as well as those who have gone on to Heaven, at this joyous time of year. Together we will work tirelessly so that one day we'll be able to give thanks for DIPG's cure as well.

Today, Tuesday November 22, 2011, marks what would have been Faith Sonia Griffin’s 9th birthday. Sadly, Faith is not here with us to celebrate her big day. After fighting bravely against DIPG for approximately 13 months, Faith earned her wings on November 2, 2008. Faith, her parents Charles and Sonia, and her younger brother Elijah are in our hearts and our thoughts today.

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 on 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 terrible disease. Cristian Rivera Foundation founder John "Gungie" Rivera had become close to Jordan and his parents, Leeana Castro and Jayson Malave, and even saw Jordan after his kindergarten graduation this past June. Jordan reminded John very much of Cristian, and watching him suffer was like living through Cristian's illness all over again. John and the entire Cristian Rivera Foundation extend their sincerest condolences to Jordan's family as they are once again reminded how horrible DIPG is and why it needs to be cured within our lifetime.

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