I've been considering setting up an actual 501(c)(3) nonprofit corporation for raising money for our son's needs and to also funnel more funding to PPMD. I have found similar Duchenne fund websites that do this or something similar. For example, check out Harrison's Fund.
Harrison's Fund is similar to PPMD in that it was started (according to their Mission Statement) to raise money that goes directly to funding research. They don't say anything about using any of the money themselves.
Another that I have found is Walk for Aidan, which does say that they use 50% of the funds raised to help with their son Aiden's needs (to help pay for medical bills, a wheelchair, the eventual remodeling of their home to be completely wheelchair-accessible, etc.) and the other 50% goes to Charley's Fund, another 501(c)(3) nonprofit that directs money to Duchenne research. I can't quite tell if Walk for Aidan is a 501(c)(3) nonprofit itself, as this is not mentioned on their website. On the donate page, it asks to make checks payable to “SHS-Walk for Aidan” and the money is handled through a high school in the Bellevue (WA) School District, and that proceeds raised benefit the Aidan Leffler Trust Fund.
I'm sure there are others like these as well (if you know of any, please post links), but these are the two best examples I've come across lately. The first is obviously a publicly supported organization, while the 2nd is probably more likely described as a private foundation.
Right now we are more than happy to continue raising money that goes 100% to PPMD through our fundraising page here, but eventually we know that we will need more for our own needs (my wife had two siblings with DMD so we know full well what this could entail). That is why I'm considering starting my own nonprofit organization for this. I'm just wondering if anyone else here in the PPMD Community has done this, how difficult was it, did you encounter any stumbling blocks or problems along the way, and if it has been beneficial? Or is this not a good idea and should we instead set up a "trust fund" or "private foundation" (and what would that entail)? Any tips or advice would be greatly appreciated.
I am curious. There seems to be alot of people setting up web pages for their sons for fund raising. I think this is a great idea for my sons. I have two with dmd. Jonah - 13 and Carter - 9 . I'm wondering the cost to set up a site. Any help would be great. Thanks