Annie Kennedy's Blog – August 2016 Archive (3)

Essential Back-To-School Resources for Duchenne

I have a confession…


I have had the privilege of serving as an advocate for families whose children have Duchenne within school systems for more than 20 years, have attended hundreds of IEPs and 504 Plan meetings, and have given even more school presentations, assemblies and in-services about Duchenne… but this year is completely different.…


Added by Annie Kennedy on August 29, 2016 at 1:30pm — No Comments

PDUFA VI & Its Impact on Duchenne

On Friday, PPMD submitted additional comments to the latest version of PDUFA VI.  At this point, there are few members of our Duchenne community who haven’t heard the acronyms ‘PDUFA’ or ‘FDASIA’. But, it’s possible that there are many among us who aren’t aware just how…


Added by Annie Kennedy on August 19, 2016 at 1:38pm — No Comments

Understanding ABLE Programs & How You Can Benefit

We know that many within our community have long been advocating for and following the passage of The Achieving a Better Life Experience (ABLE) Act and subsequent IRS rules and state implementation. In June, the first state ABLE programs launched with the initiation of Ohio’s STABLE program. At …


Added by Annie Kennedy on August 12, 2016 at 9:52am — No Comments

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