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Hi Michelle,
I asked them why they don't tell parents about PPMD in our meeting. One of them told me that "there's nothing PPMD does that we don't do", at which point I laughed. I can tell you the reason why they don't tell people about PPMD is that they want to keep people in their fundraising fold.
I said that I would like to see from them their grants as a percentage of the total cost of each researcher's lab. Basically, I wanted them to admit that they're probably funding less than 5% of the total costs of running each of these labs per year.
And I definitely do look to them to cure Duchenne. Who is better positioned and funded? All of us parents asking our neighbors for spare change and running races have spend more on research than the MDA, and they have IMMENSE corporate support.
I think the thing that infuriates me more than anything is that they are out there asking for money in MY SON'S NAME, and then spend it on themselves.
And the deception of that press release was unbelievable, I felt.
Hi Michelle,
I asked them why they don't tell parents about PPMD in our meeting. One of them told me that "there's nothing PPMD does that we don't do", at which point I laughed. I can tell you the reason why they don't tell people about PPMD is that they want to keep people in their fundraising fold.
I said that I would like to see from them their grants as a percentage of the total cost of each researcher's lab. Basically, I wanted them to admit that they're probably funding less than 5% of the total costs of running each of these labs per year.
And I definitely do look to them to cure Duchenne. Who is better positioned and funded? All of us parents asking our neighbors for spare change and running races have spend more on research than the MDA, and they have IMMENSE corporate support.
I think the thing that infuriates me more than anything is that they are out there asking for money in MY SON'S NAME, and then spend it on themselves.
And the deception of that press release was unbelievable, I felt.
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