I am raising money to help cure neuroblastoma. Neuroblastoma is a pediatric cancer that affects the sympathetic nervous system. As of today there is no cure for relapsed neuroblastoma. Progress has been made but is slow - drug companies will not fund the studies necessary because it is not profitable for them given there are approximately 650 new cases reported a year; therefore neuroblastoma has been categorized as an “orphan” cancer.
I was diagnosed with neuroblastoma when I was 9 months old. After several surgeries and chemotherapy I was one of the fortunate kids who survived. My friend Eden was not as fortunate as she fought her relapsed neuroblastoma for nearly three years. Eden passed away last February at the age of nine. Eden was a truly special little girl and had many unique qualities about her. When I first met her she thought it would be funny to call me Miss “Hiney” instead of Miss Heidi. From that point on we hit it off and became fast friends. The last time I visited Eden in the hospital will forever be in my memory. She was in a lot of pain and I helped her to the bathroom several times over a two hour period. Eden was extremely tough and proud, and would not even consider using a bed pan even though it caused her great pain to get out of bed. Each time I helped Eden to the bathroom, I would hold her arms to stabilize her and she would stare deep into my eyes and say, “Thank you so much. It is so nice of you to come visit me.” Each time I would look into her beautiful light green eyes and marvel at her graciousness. Here was this little girl, in massive amounts of pain, who had been fighting for so long and she was thanking me. I have never experienced grace from another human being as I did that day with Eden.
The loss of Eden had a profound impact on my life. The sadness and anger have not subsided but have fueled my commitment to live my life fully and to make a difference. As a survivor I feel a responsibility to the children and families that are fighting this devastating disease. This past July I decided to get involved with MagicWater, a non-profit organization to raise money for the fight against neuroblastoma.
Three months ago a few of us designed a fundraising event called HallowEden. The idea came from Eden’s favorite day of the year which is Halloween. We all agreed to raising $10,000 each and dying our hair orange (which happens to be Eden’s favorite color). So when people ask us, “Why is your hair orange?” We can tell them about HallowEden and our commitment to cure relapsed neuroblastoma. In addition to dying our hair orange we also wanted to have a fundraising Halloween party in memory of Eden. Kristin, the owner of Studio 17 (a hair salon located in Tustin, CA) generously offered her salon. She suggested a cut-a-thon where all proceeds would be donated to MagicWater. Here are the details for the HallowEden event:
What: HallowEden. MagicWater volunteers will be getting their hair dyed orange & cut-a-thon for all other participants (haircuts for women $50; haircuts for men & kids $25). For the kids there will be face painting, Halloween crafts and cookie decorating.
When: Sunday, October 26th from 11:00-4:00 p.m.
Where: Studio 17, 17331 17th Street, Tustin, CA tel: 714.734.1313
Why: To celebrate the life of Eden Brunskow
So you may be asking, “What exactly is the money is being raised for?” First and foremost, kids cannot wait years for new therapies to emerge - they simply do not have the luxury of time on their side. In an effort to help kids today, we are focusing our effort on two fronts. First, we are researching currently approved FDA drugs against different neuroblastoma cell lines to identify promising drugs that already exist. This effort has already proven very promising as we have recently identified two agents that when combined, simply blow away any chemo combination that currently exists (and neither of these two agents are chemo drugs!). We will be moving this research from in-vitro into mouse models in short order. Second, we are investing in personalized medicine. What is personalized medicine? To us, it means that each child’s disease is unique and will respond differently to different therapy. We are investing in a personalized medicine study to actually take a child’s disease, run it through complex testing to identify specific disease characteristics, and use this critical information for selection of therapy. The best therapy is the one that works!
I am requesting your support. By making a donation and sponsoring me you can make a difference and help in our fight to cure this disease.
E-den: (ed’n) n. 1. A state of bliss 2. Paradise 3. A state of ultimate happiness 4. A sweet little girl who lost her battle with cancer