Page 1 of 1

Hsct and fundraising.

Posted: Fri Aug 03, 2012 2:57 pm
by shucks
So some friends of mine set up a 501c3 charity for the purpose of raising money for people in our community who need help with medical issues. They have adopted me as their first beneficiary since I have been accepted by dr burt for hsct and denied by insurance for entry into the trial. The next step is for the foundation to raise 135k for the procedure. Some of you guys have come up with pretty hefty sums for the procedure, and I was wondering how you went about it. I talked with Lisa who set up a web site for giving, but aside from that I am at a loss. I have raised money for many causes in the past 2k at a time, so do we do 75 of these or is there a Trick to raising larger sums that I don't know?
I am not a great web guy, but how hard is it to set up a site for giving to the fund? The 501c3 is tax deductible to the giver, and it seems, in my selfish opinion, to be a good tax idea for many people Any great ideas?

I am in the midst of another exacerbation, and doc is on the edge of switching me to gilenya. It has me thinking very hard about where to go from here, and I think jumping into fundraising head on Is the right call.

Re: Hsct and fundraising.

Posted: Fri Aug 03, 2012 8:30 pm
by georgegoss
Shucks, I'm glad to see, and I find it encouraging, that you are focused on this subject (which means you are taking a proactive approach to beating your MS). Damn, I wish HSCT were not such an expensive procedure! C'est la vie.

My wife and I wre fortunate that we had enough savings to cover the cost of the HSCT. But I can completely understand that you are younger with a budding career having not yet had the opportunity to save up the necessary funds (as is the case with most MS'ers). So you're absolutely correct that you'll have to find some creative ways to raise enough money to pay for the procedure if this is your goal.

You are on to a very good start by the creation of a charitable 501(c) fund. But obviously that will likely take some serious time to get the required funding to put you into HSCT treatment. I can think of two additional things that may help hasten things if you are interested to consider them. . . . .

1) Medical loan. Widely available from different sources.

2) Consider a safe, less expensive HSCT treatment alternative to Dr. Burt, as there are several. As you likely already know the US has the most costly medical healthcare system. Every other foreign alternative HSCT treatment facility will have a lower overall total price tag. Specifically, if you would like to receive the equivalent non-myeloablative treatment to what Dr. Burt provides, going for treatment with Prof. Slavin in Israel is an excellent alternative. Especially considering that Prof. Slavin "invented" the non-myeloablative treatment that Dr. Burt utilizes today. I know several people that have received treatment at CTCI with Prof. Slavin for about two-thirds the price. And there are other facilities for an even lower cost listed here, at about one third. . . . .

http://themscure.blogspot.com/2011/06/g ... -have.html

I have a feeling your motivation is going to shine through and make lemons out of lemonade!

Re: Hsct and fundraising.

Posted: Sat Aug 04, 2012 6:12 am
by shucks
Thanks George. Our first event is a battle of the bands in august where we have Sent out 300 invites to people that we know will need to write off some tax income by the end of the quarter. I looked into medical loans, but after student loans and my mortgage, it just can't happen. My credit is in a pretty tough spot after my trip to Chicago and the last 6 sets of Mris.
I m not not above going out o the country for it if I raise the money, but my first choice is burt, since I have so much faith in him after meeting with him and his staff. 135k. Is a ton of cash, and seems nearly insurmountable. I know some folks around here have had to raise money before, so thought I would ask.

Re: Hsct and fundraising.

Posted: Sat Aug 04, 2012 7:41 am
by georgegoss
Just a last note on the positive side that you can discuss with your own accountant. . . . HSCT is completely tax deductable (both Federal and State) here in the US, including if you seek treatment overseas at a less expensive facility.

Good luck and best wishes!

Re: Hsct and fundraising.

Posted: Sat Aug 04, 2012 7:48 am
by shucks
That's the reason for the 501. They can pay it on my behalf and have it not be income to me since it is medical. It is a win win for me and the donors. Now just to find some donors.

Thanks

Re: Hsct and fundraising.

Posted: Sun Aug 26, 2012 3:12 pm
by shucks
So our first fundraiser was Friday night! And I would call it a qualified success. We had 3 bands donate their time from 5 till midnight, got the city to donate a building, got 15 thousand dollars in items donated, and held a battle of the bands/ silent auction/ raffle, and raised in the neighborhood of 15 thousand dollars, final count pending. The best thing is that it opened doors and raised awareness in the community. Little old lady's have sent 20 bucks, and we even have a charity that may donate up to 15k (big hopes for that). Raising awareness has been even better than having the event. We invited some huge elected officials Who came out and we let them stump a little, and I have never. Even so humbled in all my life. 200 people came out to help. I hope this inspires some other folks to be proactive. We might not ever reach 150 k, but it won't be from lack of trying