A State of Emergency
- Neither our National Institute of Health (NIH) nor our National Cancer Institute
(NCI) are paying enough attention to pediatric cancer.
- Less than 3% of NIH research funds are used for all pediatric cancers combined.
(curesearch.org)
- NCI funding for all pediatric cancer clinical trials—the main pathway to new
drugs and treatments—was only 26 million in 2008, and has steadily decreased
since 2003.* (curesearch.org)
"The ten federally funded cancer cooperative groups, which enroll nearly half of
the patients in the nation who are participating in cancer trials, have begun to
shut down [clinical] trials and stop studying certain cancers amid funding concerns...
among the hardest-hit will be rare cancers such as sarcomas... "
- Amy Dockser Marcus, Wall Street Journal, 2/7/2007
*Sadly, little has changed today, in 2010.
Further...
The most vulnerable pediatric cancer patients, our teens or AYAs (adolescents and
young adults) have survival rates that are significantly lower than those for children.
- Their survival rates have shown little if any change across the decades. "...virtually
frozen since 1975." (sciencemag.org)
- Yet, clinical trials rarely include AYAs, though that is the key group of sarcoma
diagnoses (10-20 yrs.).
Our Purpose
- To carry on Sean's legacy of battling Ewing's sarcoma (ES) in order to find cancer
cures.
- To enhance the quality of life for kids and teens as they struggle with cancer.
Donations made to the Foundation will help fund new research efforts, create resources
to improve the lives of kids battling cancer, and educate the public about pediatric
cancers. Together, in this effort, we hope to give hundreds of thousands of children
and their families a fighting chance.
Goals and Projects
- Completion of The Seany Room with electronics, games, crafts, music and a variety
of educational opportunities for this special group of teens.
- "Sean L. Robins Pediatric Oncology Fellowships" support tangible current research
by providing annual monetary assistance to pediatric oncology fellows through UCSD
Department of Pediatrics and Rady Childrens Hospital.
- Through these fellowships, The Seany Foundation hopes to provide a solid foundation
for future doctors who can then make meaningful forward progress in research and
treatments.
- The Seany Foundation is providing the vital funds for a much needed Clinical Trials
Research Assistant at Rady. She/He will work exclusively to facilitate the clinical
trials there, giving patients new opportunities for life saving treatment.
On a lighter note...
The Seany Foundation has created special pre-screening Movie Nights throughout the
year. San Diego kids, teens and their families are invited and treated to a premier
movie the day before it comes out to the public. They also enjoy food, drinks and
prizes; all of this is made possible through the kindness of the foundation's amazing
donors.
Accomplishments and Progress
The Seany Foundation has established the "Sean Lewis Robins Endowed Research Fund"
at Moores UCSD Cancer Center in San Diego. So far, The Seany Foundation has contributed
$250,000 to the fund.
Learn more about Moores
UCSD Cancer Center »
The Seany Foundation has raised $100,000 to build the first Teen Activity Room on
the pediatric oncology wing of Rady Children's Hospital in San Diego. The "Seany
Room" will open for activity in September 2010.
The Seany Room will serve as a fun, safe place for teens to socialize with their
true peers and find healthy distraction from their treatment as they battle cancer.
Learn more about the Oncology Center at Rady Children's Hospital »
"...Definitely Achievable"
According to Dennis Carson, MD, Director of Moores UCSD Cancer Center,
an accomplished cancer researcher:
"...a greater scientific effort in Ewing's sarcoma is likely to have a major impact
on the disease, and could very well lead to an effective treatment. The basic mutations
that cause ES have been revealed. Now we need to know exactly how they affect the
cell's chemistry, and then develop antidotes to the abnormal chemical pathways.
With advanced technology, this goal is definitely achievable."
A grant proposal and pilot project were selected by Dennis Carson, MD and his research
team.
Michael G. Rosenfeld, MD, a widely known medical researcher was awarded the $20,000
seed money to pursue his genetic research on Ewing's sarcoma. His research led to
further breakthrough understanding of what occurs on the cellular level of ES.
Read a press release
about The Sean Lewis Robins Endowed Research Fund for Pediatric Sarcoma from UCSD
»