DIFFUSE INTRINSIC PONTINE GLIOMA:
COLLABORATION IS LEADING TO CHANGE
COLLABORATION IS LEADING TO CHANGE
Written by: Dr. Loice Swisher
"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.
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| 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.
Mikey Czech's father Steve Czech interviewed on Today
The Mikey Czech Foundation funds new hope for cancer research
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.
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.
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.
11-year-old Victim of Brain Tumor Exhibited Zest Beyond Her Years
She raised $350,000, participated in medical trials and did 100 paintings.
She raised $350,000, participated in medical trials and did 100 paintings.
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.)
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.)
Michelle Monje '98
Brain Stem Glioma Research
Dr. Michael Prados of the University of California, San Francisco
talks about advances in brain stem glioma research.
Jordan Malave Earns His Wings After Long Battle With DIPG
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.
September is Childhood Cancer Awareness Month
September is Childhood Cancer Awareness Month, a time to reflect on all the young lives that have been taken by all different kinds of cancer, including Pontine Glioma. In the same way that breast cancer is associated with pink and AIDS is associated with red, the color that signifies Childhood Cancer Awareness Month is gold. So be sure to wear a gold ribbon to show your support for children and families dealing with cancer, as well as those whose loved ones have been lost. You can also take the opportunity to support Pontine Glioma research through the Cristian Rivera Foundation by clicking the "Shop" tab and purchasing a wristband or t-shirt.
Support the National Childhood Brain Tumor Prevention Act
Dear Pediatric Cancer family or family friend,
WE NEED YOUR HELP. The National Childhood Brain Tumor Prevention Act is currently working its way through Congress. If passed, this Act would allocate $25 million a year for five years for the FIRST comprehensive research into the causes of brain tumors in children, including genetics, nutrition, the environment, and more. It will give us answers about better treatments and even prevention. To get this legislation passed we need your help. If families affected by childhood brain tumors—and all those who know them, love them, and understand what they go through--could write a letter, an e-mail, or make a phone call to their federal representatives, the future of our country's children would be brighter. As stated by world renowned neurosurgeon Dr. Patrick Kelly, "once [a child] is diagnosed with brain cancer, it's too late."
- Thousands of kids are diagnosed with a brain tumor each year and more than 40% of them die.
- The average age of a child that dies from a brain tumor is 4.
- More than 60% of those that survive face life-long complications and side effects.
That's why we're asking you to contact your Congressperson and Senators to let them know that you want to see this Act made into law. For more information and quick outlines to write a letter or e-mail, or make a call, visit www.mirasmovement.org/CBTPNA.html. For further assistance or if you have questions, e-mail cbtpna@mirasmovement.org or call (607) 319-4804. Thank you for helping us change the future for children with brain tumors!