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FDA Grants Accelerated Approval to First Drug for Duchenne Muscular Dystrophy

Posted by Pat Furlong on September 19, 2016 at 1:30pm 4 Comments

Today, my sons are dancing! Today we ALL celebrate the first FDA approval in Duchenne. Today the FDA approved Exondys 51 (aka eteplirsen) injection, specifically indicated for patients…

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Profile IconParent Project Muscular Dystrophy via Facebook
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Thank you to all of the teams and coaches that have made this day special to so many! #TackleDuchenne

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Profile IconParent Project Muscular Dystrophy via Facebook
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We love seeing all these Coach To Cure MD patches on the field! Help us #TackleDuchenne by texting CURE to 90999 to make a $5 donation!

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Profile IconParent Project Muscular Dystrophy via Facebook
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TOUCHDOWN! Today's the day to help us #TackleDuchenne. Text CURE to 90999 to make a $5 donation & then spread the word!

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Profile IconParent Project Muscular Dystrophy via Facebook
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Check out the Coach To Cure MD PSA and share it with your friends today! It's the easiest play you'll make all day to help us #TackleDuchenne!

Coach To Cure MD

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Danielle Bath joined MicahsDaddy's group
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California Families

This group is for families living in CA.
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Profile IconParent Project Muscular Dystrophy via Facebook
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On the heels of our first FDA drug approval in Duchenne earlier this week, today we celebrate PPMD’s 9th Annual Coach To Cure MD! 🏈 This incredible program continues to grow and continues to raise money and awareness for Duchenne…all thanks to great teammates like YOU! Nearly every televised game around the country will have coaches wearing CTC armbands, tweeting about Duchenne, and encouraging fans to text a donation. With over 500 universities participating, we…

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CHRISTINA RODRIGUEZ joined PPMD's group
Friday
Profile IconParent Project Muscular Dystrophy via Facebook
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Tomorrow we celebrate the 9th Annual Coach To Cure MD! 🏈 Nearly every televised game around the country will have coaches wearing CTC armbands, tweeting about Duchenne, and encouraging fans to text a donation to help us #TackleDuchenne. Check out the full listing of televised games sporting our patches!

FBS (I-A) Schedule - 2016 - NCAAF - ESPN

espn.com

Check out this NCAAF Schedule, sortable by date and…

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Michelle Scaglione replied to Candice Wright's discussion Anxiety and Stress in Large Public Elementary School: How Much is Too Much? Have You Pulled Your Son From Mainstream School and Transferred Him to. Smaller, Alternative School? Advice appreciated.
"I found out years later one of Johnnys teacher kept putting him in the time out chair.  If I saw her now I would punch her face in.  This was before his diagnose. Michelle"
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Marisa Carvalho Reis favorited Pat Furlong's profile
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Marisa Carvalho Reis shared a profile on Facebook
Friday
Marisa Carvalho Reis replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Olá, meu filho está com 9 anos e tem deleção no 45, estão a recrutar nos EU, alguem me sabe dizer se esta para breve em outros países?! Vivo em profunda anciedade, pois por enquanto ele ainda anda e tem os…"
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Andrew Kerr replied to Mike O's discussion Etiplersen will cost $300,000
"I think it was relatively well known that almost nobody was going to be able to afford this drug out of their own pocket.  It will be insurance companies (or government in some countries) that will be paying the bill. "
Friday
Profile IconParent Project Muscular Dystrophy via Facebook
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Tommy visited the University at Buffalo for a practice in anticipation of Coach To Cure MD this weekend! The University put together this package to highlight Duchenne and the amazing time he had with the team. The team surprised the family with an autographed football and let Tommy and his sister participate in the post-practice stretches. They even crafted a play just for Tommy where he could score a touchdown! Thank you UB Bulls Football for making Tommy's day and helping us…

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Webinar: SareptAssist Patient Services Overview

Webinar: SareptAssist Patient Services Overview

Please join Parent Project Muscular Dystrophy and Sarepta Therapeutics, Inc., as we host an informational webinar on Monday, September 26th at 1pm ET about SareptAssist, Sarepta's patient support program. To learn more visit www.SareptAssist.com. Speakers: - Pat Furlong, Parent Project Muscular Dystrophy -…

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tracie replied to Candice Wright's discussion Anxiety and Stress in Large Public Elementary School: How Much is Too Much? Have You Pulled Your Son From Mainstream School and Transferred Him to. Smaller, Alternative School? Advice appreciated.
"When Christopher was in the middle of first grade, we switched him from public to a small, Montessori school. His challenges weren't just the physical deterioration of DMD, he also suffered from some cognitive delay, processing difficulties,…"
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