While you have been pulling together the finishing touches for your Halloween costume this week, a group of Firstgiving fundraisers have been parading around San Francisco with new ‘dos, bright orange in hue. Yes, they’re getting into the spirit of the holiday, but the real reason for the coif is a girl named Eden: they’ve raised over $30,000 for neuroblastoma research in her honor.
We got in touch with Eden’s dad, Paul, when we came across his fundraising page and read his very moving story. He was kind enough to answer a few questions for us about HallowEden. You can read more here.
- Please tell us about why you decided to create a fundraising page.
I’m raising money to help kids with neuroblastoma. We lost our 9 year old daughter, Eden, to neuroblastoma about eight months ago. I’m committed to helping fight this horrible disease so others do not need to go through what Eden went through.
- How did you come up with the idea of HallowEden?
The concept for this fundraiser came from Eden’s favorite day of the year. She loved Halloween, and she loved the color orange. What better way to get into the spirit of Halloween then dyeing my hair orange a few days before Halloween. It seemed like a fun idea that our daughter would have loved.
- Why do you think doing something out of the ordinary, like dyeing your hair orange, is so effective for raising awareness and fundraising?
It’s my great hope that people ask me “Why is your hair orange?” so I can tell the story of Eden and what “HallowEden” is all about. Additionally, it’s a large commitment to dye one’s hair orange, and we felt that this commitment would help us raise additional money. And finally, it’s visual – like really, really visual – and gives us the opportunity to explain why our hair is orange and increase awareness to our cause.
- Why is it so important to raise money for neuroblastoma research?
The current options for relapsed neuroblastoma are dismal at best. There is no known cure for relapsed neuroblastoma, and the drug companies have little interest in seeking new therapies, as there are not enough kids with it to justify the investment.
- Several of your friends have joined you in the HallowEden event by dyeing their hair and creating fundraising pages of their own. How have the responses of your friends and community been important for raising funds for and awareness about neuroblastoma?
Our goal was to get this to spread – to have additional people participate, and hopefully make this a yearly event and grow it nationally. Individually we can only raise so much, but, through the power of networking and increasing the number of participants we feel that we have the ability to raise much more.
- How did you hear about Firstgiving?
I researched several different alternatives to support this fundraiser. I concluded that the ease of use, and the features, were exactly what we needed.
- How has Firstgiving helped you in your fundraising efforts?
It’s a great website that allows our supporters to easily see what our fundraising target is, and it’s really easy to contribute directly on-line. I know that it made a huge difference to all of us reaching our goals.
The HallowEden event has also received some local press here.
Paul,
I was moved, on so may levels, when I read what you were kind enough to share, regarding the loss of your precious daughter, Eden, your fight against this most unforgiving of diseases, neuroblastoma, and the acknowledgment that children, in particular, do not have the “luxury of time on their sides.” The rate, at which children grow, and the replication of their cells, usually seen as a sign of health, becomes one of the most insidious aspects of children dealing with cancer.
Your comment, regarding drug companies, and the justification of their “investments” with respect to why they are not more assertive, when it comes to seeking new therapies for relapsed neuroblastoma, once again, reminds us of the skewed priorities in the obscenely wealthy, and powerful, pharmaceutical industry.
You have been of tremendous service, by raising the awareness, and investing in “personalized medicine,” which many feel is the future for medicine in terms of true healing, for it is the uniqueness of people, that should have been taken into consideration, medically, a long time ago.
As importantly, you have both honored your daughter, Eden, in giving her cause a celebratory spirit, by choosing her favorite holiday,Halloween and color, orange, as well as guaranteeing built-in visibility. What little girl wouldn’t love her parents, to dye their hair orange for several days, in her honor, and crown her HallowEden.
Being festive in the face of such devastation, takes tremendous courage. Donating to help fund these studies, and solve this disease, will be an honor.
Sincerely,
Rosalie
Paul,
I feel for you and your family. I too lost a daughter to neuroblastoma. My daughter, SYDNEY, passed in November of 2007 after suffering incredibly. We also started a non-profit organization called SYDNEYFUND to raise awareness and help some of these families with those costs that are usually unforseen.
One of our events is a holloween costume party. Ikeep my head shaved generally( been that way since SYDNEY lost hers and keep it for all those afflicted) but in light of EDEN’S favorite holiday I feel an orange dome would be appropriate. We have websites; SYDNEYFUND and SYDNEYBARTONE.com; to get the word out.
I wish you so many warm prayers and hope that you and your family can find some good out of this tragedy. Keep spreading the word and fighting the fight and know that there are other families out there with the fight and resolve that you have. My only wish is that we may spare someone’s child this immense pain and suffering. Feel free to give a shout on SYDNEYFUND. We are always looking for friends.
with sympathy and respect,
Marcus A. Bartone