I am running in the Vermont City marathon to raise awareness about an aggressive childhood cancer called Neuroblastoma. Neuroblastoma accounts for 8-10% of all childhood cancers and upon relapse, is incurable. Right now, relapsed neuroblastoma children are sent home to die as there are no recommended therapy options for them. Parents are told "Your child is incurable and there is nothing else we can do". Research to give these children treatment options and to give their families hope is why I'm raising money.
This cancer devastes children and their families. It is evasive and persistant and heterogenous. It lurks around the body, rearing its ugly tumors in a childs bone marrow, or abdomen, or bones, or brain. It hides, it waits, it progresses at will and makes every affected family feel like a ticking time bomb. They live on edge...what's next? When will it return? Where will it appear next? And when it does decide to come out of hiding, it is merciless. It is painful. It is heartbreaking.
I work each day as a researcher studying neuroblastoma and what is glaringly obvious to me is that WE CAN elucidate what makes neuroblastoma tick. WE CAN figure it out, right here in Vermont. We have a brilliant, dedicated team of oncologists and researches doing cutting edge, innovative research that WILL change the lives of children with neuroblastoma. We don't get hung up in cancer politics (yes, they exist), we don't have extravagant lab-space, and we don't have a huge budget...believe me...I keep track of the budget! We DO work collaboratively, cooperatively, and perhaps obsessively because we know we can make a difference.
SO, here's the problem: We need money. We need money to give children and families with neuroblastoma more options when they are told that they have no options left. We need money to follow promising new leads through to approved therapies. We need to open new clinical trials and give children the chance to live and beat neuroblastoma.
Funding is hard to come by. The National Cancer Institute invested 4.8 BILLION dollars in cancer research in 2007....yes, BILLION. Of that, 3.6% funded pedaitric cancer research specifically. That means that 4.62 BILLION went to fund adult cancer research (breast, prostate, lung, etc.) and the dregs went to help children. It is down-right disproportionate if you ask me. Then if you factor in the small percentage of the pediatric-appropriated money to study neuroblastoma, it is hardly a drop in the proverbial bucket.
So where does our lab get money to do innovative research and open new clinical trials in neuroblastoma? GIFTS. DONATIONS. FUND-RAISERS. GRASS-ROOT EVENTS. PHILANTROPIC DONORS. PARENTS WHO HAVE LOST CHILDREN TO NEUROBLASTOMA. PARENTS FIGHTING NEUROBLASTOMA. PEOPLE WITH A HOPE AND A VISION FOR CHANGE.
Not the NIH, not the NCI, not SU2Cancer, not yet...
Last year, the University of Vermont Medical School Students raised $60,000 by collecting donations and running in the VT City Marathon. This year, the Sholler lab team is joining in their fund raising efforts and we're running and asking for money too. Please help us and donate what you can. Spread the word about neuroblastoma and the lack of funding to find a cure. Every bit helps and we need you.
Thanks for your contribution,
Erika
For more information about Dr. Sholler, Neuroblastoma, or the research we are doing here in VT and across the country, please check out www.nballiance.org
If you want to see neuroblastoma through the eyes of a parent whose child is living with it, you HAVE to see this video. Seriously, this is why I get my butt out of bed each day...
http://www.willlacey.com/2009/09/what-am-i-donating-to.html