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The FDA is listening and has told us as much. But that doesn’t mean we should stop doing everything we can to educate the Agency.

Thanks to the dozens of you who participated in PPMD’s benefit/risk project and took the time to share your story, we have been able to compile your responses and will be providing the FDA with “Patients Are Waiting…” (download PDF). Collected on our community site, we have referenced these stories in our interactions with the FDA over the last several months but we wanted them to really understand the urgency of our collective voice, the volume of our collective cries.

These are your stories, your messages to the Agency demanding that they use all the tools at their disposal to make decisions efficiently. We don’t have time.

Patients are waiting...

Click here to download the PDF

We will continue to use these stories as we support our collective cause—faster access to new treatments.

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Comment by Hamed AL-Jabili on November 23, 2014 at 9:43pm

Ladies and gentlemen Everybody here is trying to offer something to our children with muscular atrophy. ..because we see them in front of us every day while they are losing their ability to move, till they reach a sad state, and the patient is suffering while the mother suffering more for her son and the father's only concern is that he is staying home. . And medical doctors and research centers are doing their best to reach a solution that satisfy everyone. ..and the patients families get together through forum and parties to raise money for the research centers to carry out research work...the aim of which is to reach a point where this disease can be defeated. It doesn't matter who I am. .what matters is what I offer to those patients. I may have reached something that makes all happy through the restoration of the muscles strength which our patients have lost. ..through a syrup cocktail which is considered as Dietary supplement which doesn't contain any artificial or chemical ingredients and any laboratory test can proves that. By time you will see how this will make everyone happy with the results. For many years I have been working, and I have reached a stage I consider it an excellent one, but I still lack the support from the patients, their family and other groups and fora to get to the scientists and researchers who will appreciate what I have achieved for our children. I have a website and a Facebook for this matter, as well as a channel on YouTube containing some cases who used this cocktail. ..and how the muscles restored some strength. You can see them before giving your judgment. I am waiting for the big hearts that are ready to support us. I ask everyone not to judge us quickly. The evidence will prove the validity of our article. I hope your institution would publish this subject, on the hope that somebody would respond to our demand. Thank you so much. Hamed Aljabili

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