Fundraising for Neurofibromatosis

June 7, 2006 11:55 PM

An aquaintance needs help raising funds for surgery for neurofibromatosis. She's doing all she can, but time is running out and she still hasn't has enough raised yet. What else can she do?

An aquaintance (friend of a friend) has Neurofibromatosis Type 2, a neurological disease that causes benign tumours to be grown in the body.

Right now she needs surgery to remove a tumour in her hearing nerve that's causing deafness in her ear. There aren't any people here in our home country (Malaysia) that could do the surgery without severe complications, so she's getting the surgery done at the House Clinic in LA, which has plenty of expertise in hearing science. She also needs a auditory brainstem implant so that she can hear.

Her main source of fundraising is by selling t-shirts, as well as collecting donations online. She's started a non-profit (with a few friends) to raise awareness about the disease, and she's received plenty of media attention, both for the disease and for her specific needs. She also earns money through writing, and there are plenty of youth groups, churches, and student groups raising money on her behalf.

She needs US$58,600 and so far she's raised a little less than 20% of the money. (The surgeons have agreed to drop surgical costs, and the hospital's giving them a discounted rate, but it's still pricey.) Exchange rates make it particularly difficult to raise such a large amount of money in a short time. She's now looking for other ideas.

What else can she do to raise the money? I've seen some other organizations related to neurofibromatosis online but I haven't seen info on how to apply for funding for treatment through them. Are there any avenues she can look at?

Any ideas are appreciated. Thank you so much.

(yes I did post about her on MetaTalk. Someone gave the idea to ask about other sources here first, so here's hoping.)

posted by divabat to health (5 comments total)

If you haven't seen it yet, you may want to take a look at this earlier question on fundraising for medical expenses.
posted by Otis at 5:52 AM on June 8, 2006

She could try to contact the actress Gillian Anderson; NF is one of her main charities.
posted by xo at 6:58 AM on June 8, 2006

Is there a Jaycee chapter in her community? Jaycees are known for helping out the community as well as people in the community who need it, and this sounds like the kind of thing a chapter would jump on. Chapters in my state have run events that raised quite a bit of money for people.
posted by SisterHavana at 9:35 AM on June 8, 2006

What you need is an Internet meme.

Remember that woman who'd got all of those credit cards and bought loads of junk and then put up a website saying "hell yeah, help me pay it off!" You need to do something similar.

50,000 donors of $1 each, plus a couple of Big Hitters/philanthropists and you'll be there. How to get that meme? I don't know.

"Neurofibromatosis can suck it!" doesn't quite sound as good as Cancer Can Suck It.
posted by xpermanentx at 6:23 AM on June 9, 2006

xpermanentx: She is kinda trying the "Internet Meme" route. Thing is, exchange rates are a killer (had this been RM56,800 she would have had enough money for 4 people) and I doubt we even have that many Malaysians ONLINE with paying ability to begin with.

Thanks for the ideas, my aquaintance appreciates it.
posted by divabat at 5:22 PM on June 9, 2006