MDA
Hello,
I just met with three members of the MDA, one of whom heard me mention at a Darius Goes West screening that we hosted that I was not happy with how aggressively they funded research.
They wanted to talk with me about why I take Aidan to Cincinnati instead of going to Children's hospital in seattle, (where the neurologist told another family that prednisone doesn't stunt growth like deflazacort!). They also wanted to talk about what they could do to earn my support.
They brought what they thought were "supportive documents". They included a list of all projects funded by the MDA for the past three years. It included a $34,000 grant to Dr. Hoffman for non-hormonal steroids. They also brought an MDA press release about Dr. Hoffman's recent results in the puppies, where they "announce" that the "MDA-supported investigators" had a recent breakthrough in exon skipping.
I left the meeting in tears. I feel that the language of that press release is very misleading in that the MDA is basically trying to get people to think that they are funding Dr. Hoffman's exon skipping efforts, when they haven't spent a dime on exon skipping. They also recently just opened a new office in my home town, like the one in seattle wasn't big enough for them, and I'm sure they spend at least a couple of hundred thousand per year on it. And yet Dr. Hoffman is only worth 34K to them? I really hate to think about what could have been accomplished by now if the MDA was serious about actually curing this disease rather than loaning my son some crutches.
I'm sorry about the tirade - I just got so frustrated with them asking me, "How can we serve you better?", and I kept saying - take some of that 162 million you have in the bank and spend a couple million on research that actually might hit the clinic sometime soon rather than spending a pittance on a bunch of projects so that they can take credit for their success. Only a handful of grants they handed out were over $125,000.
At this rate, they'll cure duchenne in 50 years. At least they'll all have jobs until then.
I'm really sorry if I offended anyone - just been carrying this around since yesterday.
I just met with three members of the MDA, one of whom heard me mention at a Darius Goes West screening that we hosted that I was not happy with how aggressively they funded research.
They wanted to talk with me about why I take Aidan to Cincinnati instead of going to Children's hospital in seattle, (where the neurologist told another family that prednisone doesn't stunt growth like deflazacort!). They also wanted to talk about what they could do to earn my support.
They brought what they thought were "supportive documents". They included a list of all projects funded by the MDA for the past three years. It included a $34,000 grant to Dr. Hoffman for non-hormonal steroids. They also brought an MDA press release about Dr. Hoffman's recent results in the puppies, where they "announce" that the "MDA-supported investigators" had a recent breakthrough in exon skipping.
I left the meeting in tears. I feel that the language of that press release is very misleading in that the MDA is basically trying to get people to think that they are funding Dr. Hoffman's exon skipping efforts, when they haven't spent a dime on exon skipping. They also recently just opened a new office in my home town, like the one in seattle wasn't big enough for them, and I'm sure they spend at least a couple of hundred thousand per year on it. And yet Dr. Hoffman is only worth 34K to them? I really hate to think about what could have been accomplished by now if the MDA was serious about actually curing this disease rather than loaning my son some crutches.
I'm sorry about the tirade - I just got so frustrated with them asking me, "How can we serve you better?", and I kept saying - take some of that 162 million you have in the bank and spend a couple million on research that actually might hit the clinic sometime soon rather than spending a pittance on a bunch of projects so that they can take credit for their success. Only a handful of grants they handed out were over $125,000.
At this rate, they'll cure duchenne in 50 years. At least they'll all have jobs until then.
I'm really sorry if I offended anyone - just been carrying this around since yesterday.
Replies to This Discussion
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Permalink Reply by Wyatt's Mommy, Melissa on
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Jerry,
It's a fine line. PPMD is giving me the hope that I need for my baby, now. But I know down the line I will need MDA as well. MDA supports over 35 diseases, so I understand that they need to spread their money out. It's just hard for me right now, because my son is so little (19 months). MDA does so many great things, but I want to talk research right now, not medical equipment, etc. Hopefully a treatment will be available before I need MDA, I pray, that's what will happen. MDA raised something like 54 million dollars in their recent telethon which is fantastic, I pray that money will help find a cure or treatment for DMD and the other 34 diseases MDA funds. I do believe the other services they provide are of great importance as well.
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.
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Permalink Reply by MommaToo on
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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.
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PPMD is going to be our saving grace. I just know it.
MommaToo said: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.
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Permalink Reply by Mindy on
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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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Why in the world do they need another office so close. I hope it does serve better. However, I just got a letter in the mail from them, I'm sure you got it too, about how they are cutting back, why a new office, now? I (and I'm sure others too) would rather that money get split up between the 35 illnesses they support to help with treatments and cures. I'm concentrating my efforts on PPMD. I did donate to MDA at the grocery store, but PPMD is doing what I need done for Wyatt now and what will effect his life in the long run. I'm excited to be doing a fundraiser for Coach to Cure MD, this coming weekend. My goal is $1000, I hope I get it. And every dime is going to PPMD!
Have a great evening.
Melissa :).
Mindy said: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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