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What you've got to remember is that the MDA covers many more diseases than just Duchenne. They were also founded during a time when there was no hope for a cure in the forseeable future. So they chose to focus only part of their resources on medical research and much of it on social services. So while PPMD may be where our hopes and dreams lie for a real future for our sons, the MDA is really the best option for families with all dystrophies who are struggling with how they are going to afford the next piece of medical equipment.
The MDA is run largely by professional fundraisers and social service professionals, where PPMD is run by parents living in the trenches. So we naturally feel more of an affinity towards this group. They each have their place and are both worthy of our support, but we have to be realistic about what the MDA can really do for Duchenne.
MommaToo said:Wow, this is exactlly how I feel. I love the MDA and I really want to be supportive of the MDA. With that said, its maddening that they have raised so much money over the years, and the progress has been minimal. There has been more progress since the PPMD has come around than in all the years the MDA has had there fundrasing. I think their intentions are good, but possibly they could use better management. I feel though with the amount of money they have raised, there should be more knowldege and help out there. Its got to where you only see a rep from the MDA when its fundrasing time.
What you've got to remember is that the MDA covers many more diseases than just Duchenne. They were also founded during a time when there was no hope for a cure in the forseeable future. So they chose to focus only part of their resources on medical research and much of it on social services. So while PPMD may be where our hopes and dreams lie for a real future for our sons, the MDA is really the best option for families with all dystrophies who are struggling with how they are going to afford the next piece of medical equipment.
The MDA is run largely by professional fundraisers and social service professionals, where PPMD is run by parents living in the trenches. So we naturally feel more of an affinity towards this group. They each have their place and are both worthy of our support, but we have to be realistic about what the MDA can really do for Duchenne.
MommaToo said:Wow, this is exactlly how I feel. I love the MDA and I really want to be supportive of the MDA. With that said, its maddening that they have raised so much money over the years, and the progress has been minimal. There has been more progress since the PPMD has come around than in all the years the MDA has had there fundrasing. I think their intentions are good, but possibly they could use better management. I feel though with the amount of money they have raised, there should be more knowldege and help out there. Its got to where you only see a rep from the MDA when its fundrasing time.
That is true, they have several conditions they work on. Their social programs have been cut more and more over the years. Although I know they have some great services for many, its inconsistant, and sporatic at best. Although I do value the MDA, the only shred of hope I have left is within the ppmd.
Jerry Dallapè said:What you've got to remember is that the MDA covers many more diseases than just Duchenne. They were also founded during a time when there was no hope for a cure in the forseeable future. So they chose to focus only part of their resources on medical research and much of it on social services. So while PPMD may be where our hopes and dreams lie for a real future for our sons, the MDA is really the best option for families with all dystrophies who are struggling with how they are going to afford the next piece of medical equipment.
The MDA is run largely by professional fundraisers and social service professionals, where PPMD is run by parents living in the trenches. So we naturally feel more of an affinity towards this group. They each have their place and are both worthy of our support, but we have to be realistic about what the MDA can really do for Duchenne.
MommaToo said:Wow, this is exactlly how I feel. I love the MDA and I really want to be supportive of the MDA. With that said, its maddening that they have raised so much money over the years, and the progress has been minimal. There has been more progress since the PPMD has come around than in all the years the MDA has had there fundrasing. I think their intentions are good, but possibly they could use better management. I feel though with the amount of money they have raised, there should be more knowldege and help out there. Its got to where you only see a rep from the MDA when its fundrasing time.
All I can say is that the MDA just opened another office in Bellevue, where I live. Keep in mind that it's just 15 minutes from Seattle, where the main office is. They felt they weren't "serving their customers" well enough with the Seattle office. This is at a time where they are cutting back on research grants.
If I'm going to donate money or ask my friends to, it certainly isn't to an organization with that kind of money management skills...
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