Spinal Muscular Atrophy (SMA) Archives - Page 4 of 10

Access to Health Care and to Approved Therapies is Essential for MDA Families

R. Rodney Howell 05/01/201705/01/2017

Despite the progress in the quest for treatments and cures, individuals living with the life-threatening diseases that newly approved drugs treat are facing a new challenge — gaining access to the approved therapies. Today, some individuals and families are unable to access FDA approved therapies, which can significantly impact the health and life of the person denied access. Not having access to appropriate therapies is unacceptable. A treatment cannot change the lives of families and individuals if they do not have access to it.

Fundraising & Events

40 Plus Years of Dedication to MDA: Parents Give Back to the Organization that Helped Their Kids

Olivia Howell 04/28/201701/18/2019

Nearly forty-five years ago, after John and Lois Washburn’s two eldest children were diagnosed with spinal muscular atrophy (SMA), the couple began volunteering with MDA and haven’t looked back.

Adults

The Gift is in the Giving: Todd Dewey Prepares for 28th Summer as MDA Summer Camp Volunteer

Erinn Unger 04/26/201704/11/2018

Longtime MDA Summer Camp volunteer Todd Dewey shares why this will be his 28th summer giving back to the organization he loves.

Advocacy

What is Advocacy and Why Should You Care?

MDA Admin 04/20/201704/22/2017

In advance of MDA’s first ever Advocacy Conference, taking place April 23-25, we asked several advocates to unpack the idea of advocacy: what is it, why they became advocates and why it is necessary for others to follow their examples. Their responses follow.

Team Momentum

U.S. Air Force Senior Airman runs with Team Momentum for his family and all MDA families

MDA Admin 04/19/201704/19/2017

Air Force Senior Airman Mike Hall, 20th Aerospace Medicine Squadron flight and operation medical technician conquered the 2017 Boston Marathon with Team Momentum, running for his sister Danielle, in memory of his brother DJ and for all families impacted by neuromuscular diseases.

Young Adults

I’m an Adult. Talk to Me Like One.

Joe Akmakjian 04/18/201705/25/2017

I’m a 25-year-old college graduate. I’m an adult and I can prove it. I have bills, grown-up responsibilities and the obligation to do things I don’t want to do. Still, regardless of the date of birth listed on my Colorado State ID, some people still treat me like a kid. Unfortunately, a lot of the world finds it easy to infantilize people with disabilities.

Young Adults

MDA Cohosts and Sends Representatives to SMA Patient Focused Drug Development Meeting with FDA

Hugo Trevino 04/18/201705/02/2017

Being chosen to speak in front of the FDA and represent the SMA community makes me feel incredibly honored. Today’s SMA Patient-Focused Drug Development (PFDD) meeting with the FDA means we have a voice as patients living with rare muscle diseases. The PFDD meeting was set up so that patients with SMA and the parents of children with SMA could stand before the FDA and voice their concerns, discuss their experiences with research and address the need for continued research that evolves to include more patients. This is my story.

Muscle Walk

5 Reasons You Should Join MDA Muscle Walk

MDA Admin 03/13/201702/28/2018

Learn why five MDA families are equally dedicated to Muscle Walk — and why you should also support this incredible cause.

Advocacy

MDA Recommends SMA Be Added to Newborn Screening Nationwide

Kristin Stephenson and Amanda Haidet-Phillips 03/02/201703/03/2017

Many families whose children have spinal muscular atrophy (SMA) endure a long and difficult diagnostic odyssey. This may soon change, however, based on recommendations MDA recently made with a coalition of partners that SMA should be added to the list of conditions newborns are screened for at birth in the United States.

Kids

A Strong Future: Shamrockstar Maya Benefits from New Treatments for SMA

Stephanie Hlywak 02/28/201703/03/2017

Over the past 35 years, the MDA Shamrocks program has raised more than $300 million to help save and improve the lives of families living with muscular dystrophy. Get to know Maya, who graces the 2017 green MDA Shamrock.

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Tag: Spinal Muscular Atrophy (SMA)