Actualización de la peticiónFDA Accelerated Approval of Genervon's GM604 for Use In ALSKeep the Pressure Up!
Nicholas GrilloSan Francisco, CA, Estados Unidos
12 feb 2015
We're pleased to announce that we're now more than 140,000 petitioners strong! Your efforts to spread the word are paying off as we're starting to get the attention of mainstream news outlets, including the New York Times last Thursday and The Guardian today. But the job is far from done. We've recently learned the FDA's decision on accelerated approval for GM604 could take 30-60 days after meeting with Genervon. This means we all have to keep at it. Don’t go away quietly – Keep the pressure up! Keep writing Congress and the FDA (even if you already have). If we grow quiet, the FDA will think we are just going to go away. In order to make a difference, our voices need to keep getting LOUDER until GM604 is approved! Please take a few minutes to contact the folks below. It could save thousands of lives. Continue emailing and tweeting your personal stories, thoughts, and the petition - especially to key Senators (below). Reach out to organizations, religious groups, the media, and medical doctors who could offer support for accelerated approval of GM604 - the ONLY potential lifeline for ALS right now. To email the FDA, address the email to: druginfo@fda.hhs.gov Then cc these people at these FDA: margaret.hamburg@fda.hhs.gov william.dunn@fda.hhs.gov stephen.ostroff@fda.hhs.gov And cc these news shows: news@cbsnewyork.com Viewermail@newshour.org contact.nbcnews@nbcuni.com anderson.cooper@turner.com foxnewstips@foxnews.com To email Senators Alexander, Murray, and Paul: http://www.alexander.senate.gov/public/index.cfm/email http://www.murray.senate.gov/public/index.cfm/contactme http://www.paul.senate.gov/?p=contact To tweet the FDA: http://ctt.ec/uEdGb To tweet Senators: http://ctt.ec/j230_ Read Angelina Fanous' campaign article in the NY Times: http://well.blogs.nytimes.com/2015/02/05/for-a-l-s-patients-a-hopeful-drug-thats-out-of-reach/?ref=health Next Step: Reach Out For Official Support From Organizations & Medical Professionals Here’s what we’ve been doing – we’ve been emailing and calling doctors and all kinds of organizations. We tell them: 1) Our names and what our personal experience is with ALS. If you don’t have ALS or don’t know someone with ALS, just say you support the global ALS community. 2) We say we working on promoting a campaign that is urging the U.S. FDA to promote a new ALS treatment to their Accelerated Approval Program. “There is a new experimental treatment for ALS developed by a innovative biopharmaceutical company, Genervon Pharmaceuticals. Their drug is “GM604”, which has shown to be safe and efficacious. Genervon has a meeting scheduled with the FDA sometime in the near future, and are going to ask the FDA to promote this treatment to the Accelerated Approval Program (AAP). 3) We explain that we are seeking official support from medical professionals, advocacy organizations, and religious groups. 4) We provide these links to the petition and the list of current organization that support the campaign. https://www.change.org/p/janet-woodcock-m-d-fda-accelerated-approval-of-genervon-s-gm604-for-use-in-als https://www.change.org/p/janet-woodcock-m-d-fda-accelerated-approval-of-genervon-s-gm604-for-use-in-als/u/9342736 5) We ask if we can add their name / their organization’s name to the list. 6) We give this email address to respond to (you can too) gm6nick@gmail.com. As always, people can email Nick Grillo at gm6nick@gmail.com or Jehad Majed at jmajed@mac.com. Your efforts are making our campaign very successful. Thank you, Nick Grillo and Jehad Majed
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