May 2016
Together we can Cure Duchenne!
Research
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Sarepta Therapeutics Announces FDA Will Not Complete the Review of the Eteplirsen New Drug Application By The PDUFA Date

Sarepta Therapeutics, Inc. (NASDAQ:SRPT), a developer of innovative RNA-targeted therapeutics, announced May 25 that the U.S. Food and Drug Administration (FDA) has notified the Company that they are continuing their review and internal discussions related to our pending NDA for eteplirsen and will not be able to complete their work by the Prescription Drug User Fee Act (PDUFA) goal date of May 26, 2016...

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Santhera Updates on Regulatory Filings for Raxone (idebenone) in Duchenne Muscular Dystrophy (DMD)

Santhera Pharmaceuticals (SIX: SANN) announces that it has submitted comprehensive briefing material and a meeting request to the FDA to discuss the filing of a New Drug Application (NDA) for Raxone® (idebenone) for the treatment of DMD patients not taking concomitant glucocorticoids...

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WAVE Life Sciences to Advance Next-Generation Nucleic Acid Therapies to Address Unmet Need in Duchenne Muscular Dystrophy

WAVE Life Sciences Ltd. (NASDAQ:WVE), a genetic medicines company focused on developing stereopure nucleic acid therapies for patients impacted by rare diseases, reaffirmed on May 9 its commitment to advance next-generation nucleic acid therapies to address the significant unmet need of patients diagnosed with Duchenne Muscular Dystrophy (DMD)...

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DMDRP Program Announcements Released

The Duchenne Muscular Dystrophy Research Program announcements have been released by the Congressionally Directed Medical Research Programs. Debra Miller is on the review committee. We continue to be impressed with the program and are thankful for the Duchenne funding...

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CureDuchenne Cares
Abilities Expo Video Blog

Two New Physical Therapists Join CureDuchenne Cares Therapy Team

Proper physical therapy designed particularly for those with Duchenne muscular dystrophy, a fatal genetic disease that causes muscle deterioration, can extend vital mobility to a young patient’s life...

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Abilities Expo Video Blog

Biotech Capital of the U.S. Welcomes CureDuchenne Cares with Open Arms

More than 45 Duchenne family members and caregivers came to the CureDuchenne Cares family workshop in Waltham, MA on May 14 to learn about Duchenne management, see live stretching demonstrations, listen to biotech representatives, and test out an assortment of mobility equipment...

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News
Vince Young Hosts Champions to CureDuchenne Event to Find a Cure for Duchenne Muscular Dystrophy

A Charitable Goal.

Anaheim Ducks captain Ryan Getzlaf uses his celebrity status to support an expansive philanthropic portfolio. Check out and share this amazing article in Newport Beach Magazine about Ryan and Paige's support to help cure Duchenne...

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Vince Young Hosts Champions to CureDuchenne Event to Find a Cure for Duchenne Muscular Dystrophy

Debra Miller Earns Rare Impact Award

Congratulations to Debra Miller for being honored with a Rare Impact Award from NORD, the National Organization for Rare Disorders.  On May 17 Miller has honored at the Warner Theatre in Washington DC during NORD’s annual celebration for the year’s top achievements in rare diseases...

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Vince Young Hosts Champions to CureDuchenne Event to Find a Cure for Duchenne Muscular Dystrophy

Waiting for a Cure

Unlike most boys with his disease, 12-year-old Evan Procko can still walk.  Usually, they’ve already lost that ability by his age, according to his father...

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The Wait for An Approved Drug for Duchenne Continues

The wait continues.  Sarepta Therapeutics announced this morning that the FDA will not complete the review of the eteplirsen new drug application by the PDUFA date...

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Recent Success
Vince Young Hosts Champions to CureDuchenne Event to Find a Cure for Duchenne Muscular Dystrophy

Third Annual Blingo Raises $200,000 For CureDuchenne

On Saturday, April 30th, CureDuchenne, a national nonprofit that raises awareness and funds for research to find a cure for Duchenne Muscular Dystrophy, hosted a “blinged-out” event at The Logan Hotel—featuring special bingo callers including,  FOX29 News General Assignment Reporter, Jennaphr Frederick, former Governor Edward G. Rendell, WMMR Preston and Steve show producer, Marisa Magnatta, local sensation John Bolaris, and comedian Joe Conklin in celebration for a cause to help save the lives of those with Duchenne...

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Upcoming Events
CureDuchenne Venture Philanthropy Model Featured in Forbes Insight Report

CureDuchenne Cares Workshop for Families, June 11, Long Island, NY

Please join CureDuchenne for a free, informative class on Duchenne muscular dystrophy on May 14 in Waltham, MA for family members and caregivers at 70 3rd Ave, Waltham, MA from 9 a.m. 2 p.m...

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CureDuchenne Venture Philanthropy Model Featured in Forbes Insight Report

CureDuchenne Cares Workshop for Families, July 9, Chicago, IL

Please join CureDuchenne for a free, informative class on Duchenne muscular dystrophy on July 9 in Chicago, IL for family members and caregivers at Vitals Rehabilitation, 5820 W Irving Park Rd, Chicago from 9 a.m. 2 p.m...

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CureDuchenne Venture Philanthropy Model Featured in Forbes Insight Report

CureDuchenne Cares Workshop for Families, July 30, Sacramento, CA

Please join CureDuchenne for a free, informative class on muscular dystrophy on July 30 in Sacramento, CA for family members and caregivers at Shriner’s Hospital for Children, 2425 Stockton Blvd, Sacramento from 8:30 a.m. 2 p.m...

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CureDuchenne Venture Philanthropy Model Featured in Forbes Insight Report

Getzlaf Golf Shootout, August 26 and 27, Costa Mesa and Dana Point, CA

The 6th Annual Getzlaf Golf Shootout hosted by Ryan Getzlaf, captain of the Anaheim Ducks is a two-day charity golf event that brings together athletes, celebrities and community leaders, all teaming up in support of CureDuchenne...

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CureDuchenne Venture Philanthropy Model Featured in Forbes Insight Report

All in for Duchenne, October 15, Sylvania, OH

The annual All in for Duchenne event benefiting CureDuchenne is on October 15 from 6 p.m. to 11 pm. Tickets include admission to the event, dinner by Jeds Barbeque and Brew, drinks and chance to win in the reverse raffle. Proceeds of the event will help fund Duchenne muscular dystrophy research...

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