Does anyone know if there is such a thing? Like a walk or run or something? Is anyone interested in starting something? I have doctors stare at me like I grew a third eye when I tell them what I have. The lack of info is appalling! Let’s do something! I saw at least 15 people, including me, living in Florida affected by this cancer. LET’S STIR S*** UP!! LET’S GET IT KNOWN!
The only foundation I know of that does fundraising for synovial sarcoma only is the Paul Nabil Bustany Fund:
So far, they gave the money raised for research grants to Memorial Sloan Kettering Center in NY and University of Utah.
There are also foundations that are more wide in scope, like the Liddy Shriver Initiative (where you can choose which sarcoma you want to give the money for):
http://sarcomahelp.org/and the Sarcoma Foundation of America (where you can't choose but this foundation has funded several grants for synovial sarcoma research already):
There are a couple more I think but I am not very familiar with them...
The Liddy Shriver Initiative had a nice idea about how to spread fundraising efforts and created the Team Sarcoma:
http://sarcomahelp.org/team_sarcoma.html
The idea is that everybody can organize their own fundraising event and spread the word about sarcoma in their surrounding. In the past the events were coordinated the same week but this year, they decided to discontinue the coordination.
Usually research grants are in the order of $20,000. So if you can raise that much money on your own, you can choose who you want to give it to. Otherwise, you have to join another organization (like one of the above).
If you want to start your own foundation, here are some tips:
http://grantspace.org/Tools/Knowledge-Base/Nonprofit-Management/Establishment/Starting-a-nonprofit
Elodie has GREAT info. I am an RN and when my son was diagnosed, I quickly went to my medical dictionary (from 34 years ago) and the word "sarcoma" was not even in my Taber's (a medical terminology dictionary)!
I here you though! This is like a "Mystery Cancer". Thank God that, at least, there is new research being done and many clinical trials. I am up for any kind of awareness that is out there!
I think we should try and resurrect the national awareness day events... Or get with all the other sarcoma folks out there and make a "month"... I wish I had money. I would start a national awareness campaign with billboards and commercials
Elodie- You are absolutely awesome!
There is a French osteosarcoma survivor who is doing the "Tour de France" on crutches right now. He was amputated when he was 18 years old because of osteosarcoma. He is now 47 years old. He decided to follow the challenge set by Terry Fox. He did half way already (did more than 2000km, in other words 1243 miles). He started in March and hasn't stopped one day. His blog is here:
http://guyamalfitano.over-blog.com/
It doesn't mention how much money he collected so far but I am quite amazed by his effort. I would not be able to even complete one day of marathon, I'd probably be dead after one hour ;-)