Hi everyone,

My husband Steve and I have donated to The MDA Telethon every year for the past few years since our son's DMD diagnosis. I wanted to know how to best spend our certain x dollars not only to help our son, but others as well. Would it be best to donate to MDA or PPMD or Both orginizations??? I have watched the Jerry Lewis MDA Telethon my whole life and it seems almost wrong to not donate to them. Also, it seems wrong to donate to just PPMD and not give to others. I'm not looking for someone to tell me what to do. I just need other opinions. Any help out there would be greatly appreciated.

Suzanne

Views: 401

Reply to This

Replies to This Discussion

I strongly 100% agree with Patty Sherman. We may get more help or information from PPMD, but we also get help from MDA no matter how small. I to am finding flaws within MDA so that is why I speak up when and whereever needed. There are good MDA Clinics out there you just have to look for them, if you are able. MDA has 40 some diseases to cover and that's alot, but they are still important. If I'm wrong about the # of neuromuscular diseases please let me know. I could not accept help from MDA or PPMD for that matter if I did not give to either of them, they both help my son/our sons. I strongly feel compassion and my heart goes out for everyone of these boys/men with DMD/BMD my son is included in that and I want more than anything in the world to find a cure, but other families that are affected by neuromuscular disease are just as scared for their loved ones as we are and deserve the same respect and compassion that our sons and their families get and deserve just by being apart of the human race. It's about giving back to our fellow man. If I can't give to my neighbor then I have no right to ask for anything from them. So with all that said, to all who read this please keep in mind about what is going on with your neighbor, because he/she could be going thru something very similar.

God Bless,

Suzanne
The MDA has the very large endowment, over $200,000,000.00, which could be used today to move up the finish line of real treatments for all of the neuromuscular diseases that are under its umbrella, and it spends about the same amount of money on fundraising as it does on research. I suspect that a great deal of money that it collects is spent internally in all the usual ways in which non-profits can be inefficient. Because of the quality of its brand name, I would rather see it be reformed internally than stand outside and throw rocks at it.

Bozena Sporna said:
I think that is good to donate to both. Many people are using some help of MDA for equipment , most of us used, or will use standard $2000 /per 3 years of help towards orthotics or scooter/wheelchair.We all are using MDA clinics, Some of MDA clinics are better some worse, but they exist and they are good at least in time of diagnosis and in time of more advanced needs .MDA have equipment loan closet. PPMD is fighting for research and cure . MDA is helping for every day ( and they do things for research too) We do not know from where our cure would came; PPMD? MDA? Charlies Fund?All together ?We parents of kids with deletions and duplications can't predict what would be a true cure and when. So I would keep all sources" active."many research is paid by both PPMD and MDA.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2020   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service