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Tag: Spinal Muscular Atrophy (SMA)

Personal Stories, Young Adults

The Cochran Family Shows that Caregiving is a Family Affair

MDA Admin 11/13/201711/14/2017
National Family Caregiver Month, National Family Caregivers Month

The Cochran’s, whose daughter Lindsay lives with SMA, share their experiences providing care to a loved one who lives with a NMD.

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Research

Participants Sought for FIREFISH SMA Study

Amy Madsen 11/09/201704/04/2018
ACE-083

Researchers are looking for individuals with type 1 SMA for a clinical trial to test the investigational drug RG7916.

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News, Research

Participants Sought for SMA Gene Therapy Study

Amy Madsen 11/07/201711/07/2017
AVXS-101

Researchers are looking for individuals with type 1 SMA to test efficacy for its SMA gene replacement therapy AVXS-101.

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Personal Stories, Kids

Magic Wheelchair Makes Mario Kart Halloween Magic for Boy with DMD

MDA Admin 10/31/201710/31/2017
MAGIC Wheelchair

Iker, who lives with DMD, got his dream Halloween costume this year with a little bit help from Magic Wheelchair!

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Personal Stories, Young Adults

Sawsan Abuosbie, Who Lives with SMA, Talks College, Job Hunting and Work Life

Sawsan Abuosbie 10/16/201710/16/2017
National Disability Employment Awareness Month

In recognition of National Disability Employment Awareness Month, Sawsan, who lives w SMA, shares her experience of joining the work force.

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Research

Jerry Lewis’ Work Helped Scientists Discover the DMD Gene

MDA Admin 09/03/201709/04/2017
jerry lewis

In October 1986 Jerry Lewis announced the DMD gene had been discovered, a monumental moment in MD research.

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Personal Stories, Adults

With One Finger, AJ Brockman Paints the World

Chris Anselmo 08/31/201708/31/2017
AJ Brockman

AJ Brockman, an artist who lives with SMA, uses only the index finger on his left hand to create works of art.

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Young Adults, MDA Ambassadors

Debunking Myths about SMA

Joe Akmakjian 08/24/201708/24/2017
SMA Awareness Month

MDA National Ambassador Joe Akmakjian debunks a few myths about SMA in recognition of SMA Awareness Month.

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Research

Five Questions with Researcher Lyndsay Murray

Amy Madsen 08/14/201708/14/2017

Lyndsay Murray of the University of Edinburgh in Scotland was awarded an MDA research grant to investigate how therapies work at different stages of SMA

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Muscle Walk

“A Lot of People Care About Me:” Muscle Walk Raises Money and Teen with Myotonic Muscular Dystrophy’s Spirits

Olivia Howell 05/09/201705/09/2017
myotonic muscular dystrophy

After Erica Destache was diagnosed with myotonic muscular dystrophy, her family raised a whopping $20,000 for their local MDA Muscle Walk.

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