Replies to This Discussion

Permalink Reply by cheryl cliff on September 1, 2008 at 4:53pm

Hi Suzanne,

Have you had a chance to compare the financial statements of MDA vs PPMD? They are available online if you want to check them out. We decided to give mainly to PPMD simply because MDA doesn't handle just Duchenne/Beckers. They are covering quite a few diseases that have nothing to do with Duchenne. Curing Duchenne is the only thing that will keep our sons alive...camps are great fun and I don't want to knock them...but we need a cure.

Comparing the financial statements also reveals how your donation dollars are spent. If you donate to PPMD you can contact the office and ask that every cent you give is directed to the research lab/program/scientist of your choice. For example, if your son will benefit from exon skipping instead of PTC124 you can send it toward exon skipping. MDA doesn't offer this. Some programs or Universities do take direct donations but skim something off the top, to "keep the lights on" as they say. Personally, I don't think the lights will realistically go off if the donated dollars go to where they will best work for our sons - into research labs. And, PPMD will keep track of where your donated dollars are spent and send you a follow up statement showing where the money went!! All you have to do is ask.

PPMD is completely transparent as an organization who's main goal is the same as mine - getting
a cure for our sons. No other non-profit offers this.
Who can beat that.
I hope this helps!
cheryl

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Permalink Reply by Joanne Keeley on September 1, 2008 at 7:20pm

Dear Suzanne,
I second all of Cheryl's points-
With 40+ muscular dystrophies MDA is looking at- we need the focus on Duchenne/Becker treatment for our boys. In the beginning when we first got our
diagnosis, this was and has remained so important for me.
I am still asked by MDA each year if Wyatt would like to attend summer camp. We decline
because, again it's a personal decision based on Wyatt's feelings.
Joanne

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Permalink Reply by Tanya Fleming on September 1, 2008 at 8:08pm

I agree with Cheryl Too. I don't mind helping MDA with awareness about DMD but PPMD is where I think the cure will come from, Not MDA

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Permalink Reply by Angela on September 1, 2008 at 9:18pm

I like to use Charity Navigator and see how they rate organizations and where my money is used:

MDA - http://www.charitynavigator.org/index.cfm?bay=search.summary&or...

PPMD - http://www.charitynavigator.org/index.cfm?bay=search.summary&or...

The short story: MDA is 2 stars out of 4 and PPMD is 4 stars out of 4

I hope that helps!

Ang :)

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Permalink Reply by Suzanne Desmond on September 1, 2008 at 10:43pm

Hi everyone,

I would like to thank everyone who answered my questions. You all have been very helpful.

God Bless all of you,

Suzanne

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Permalink Reply by Keith Van Houten on September 2, 2008 at 4:50pm

I give to both organizations. The telethon generates an awful lot of awareness with the public for MD, which has some value, above and beyond whatever portion of the donation makes its way into DMD research.

I only lasted about 15 minutes into the broadcast before I couldn't watch it anymore, but Jerry Lewis is a remarkable individual for being dedicated to this cause for so long. I think this was his 43rd telethon. I'm happy to support him, and to get the chance to thank at least one of the volunteers answering the phones and taking the pledges.

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Permalink Reply by Lee Ann Faeth on September 2, 2008 at 4:55pm

I just wanted to add that when I have done fundraising for the MDA, I have requested that all donations be earmarked for Duchenne/Becker research only. I have also asked family and friends that have donated to request the same. Although I have been assured by staff at the MDA that this is happening, I don't really know for sure if the money is truly allocated for Duchenne/Becker research.

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Permalink Reply by MicahsDaddy on September 2, 2008 at 6:40pm

I only raise funds for PPMD as their focus is soley on my sons diagnosis.

MDA raises plenty of money without my help, so I don't put any of my focus on them. Becuase of what they raise every year, I am appreciative for the power scooter and 2 sets of AFO's we have received over the past 3+ years.

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Permalink Reply by Liisa Underwood on September 2, 2008 at 10:42pm

I did a fundraiser recently with help from both MDA and PPMD. MDA did allow me to designate the money. I really love my buddy Ryan here with DMD, though. PPMD is very focused, so I'm more inclined to do future fundraising activities with PPMD only.

Lee Ann Faeth said:

I just wanted to add that when I have done fundraising for the MDA, I have requested that all donations be earmarked for Duchenne/Becker research only. I have also asked family and friends that have donated to request the same. Although I have been assured by staff at the MDA that this is happening, I don't really know for sure if the money is truly allocated for Duchenne/Becker research.

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Permalink Reply by Suzanne Desmond on September 3, 2008 at 1:28pm

Hi Everyone,

Thanks again to all who have responded. I think I will keep this going, I think its a good subject for everyone to talk about.

On Monday my husband Steve and I decided to give to both MDA and PPMD. We will be giving the majority of our annual donation to PPMD in order to help our son Francis. Though it is important to help our son, I also feel that my donation to MDA will help others with Neuromuscular Diseases which in turn will help all with Muscular Dystrophy. I to think Jerry Lewis has done so much for this community of people with MD and their families. God Bless him as well as Pat Furlong for helping all of us with their own talents, love and compassion. Without these people and their orginizations where would all of us be right now? We would be alone.

Thank you Pat Furlong/PPMD and Jerry Lewis/MDA!!

God Bless,

Suzanne

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Permalink Reply by Rhiannon Traigle on September 11, 2008 at 1:07am

I agree with donating to both organizations, but I think it depends where you want your money spent and for what reasons. I like to support MDA because I think that the summer camps and helping cover costs for our drs are important. However, MDA has a much higher administrative overhead (when you consider the number of indiviuals working for the organization compared to PPMD, marketing costs, materials, rent for office space, insurances, etc..all that is involved in running a business) and I assume that less money is used for direct services. PPMD has been honored for being an organization that puts dollars into serive (ie research funding). With MDA, your money will cover supportive services such as summer camps and case management, with PPMD your money will support research and awareness efforts.

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Permalink Reply by Joanne Haswell on September 15, 2008 at 8:16am

We do appreciate the help MDA gives to families however, In 2006 out of a $188 million budget LESS than 5% went to DMD specific research and I feel that if there is hope for our generation of little boys---- research is where we should be. I think the answer is close and we need the money to bring it out. This is my opinion for what it's worth. We support PPMD for research 100%.
Lukey's Grandma

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