PLEASE HELP THESE 3 boys! All it will take us a simple signature! Then.. Share on your timeline. I promised Karen I would do what I can to help. I wanted to share this We the People petition with you: wh.gov/luzA2 My friends Steve and Karen Bubach have grandsons (all 3 from same family) who all have PKAN disease. Read their story on Facebook (Kulsrud Brothers) or just google it and you will see news stories about the family. Very sad – no cure for this and not a long life expectancy. There is a drug that has worked to slow the progression and symptoms but the FDA has not approved it for the US. It really is their only chance at this time, and with their varied conditions, they would be good test subjects as well. The petition is to urge the FDA to approve “RE-024” for treatment of PKAN, but they need 100,000 signatures by September 12. They have only 7,000+ at this time. It is quick to sign and I hope you share this with others. Thank you!
Posted on: Fri, 29 Aug 2014 02:50:39 +0000
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