Advocacy Action for MD

Young Adults, Living with Muscular Dystrophy, Advocacy

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.

Advocacy

Researchers and MDA Speak Out on Capitol Hill Today

Kristin Stephenson 03/22/201703/22/2017

Researchers from leading institutions around the country and MDA are visiting Capitol Hill to urge Congress to enact sustained and robust funding increases for the National Institutes of Health (NIH).

News, Advocacy

MDA Outlines Principles of Coverage for ACA Replacement with Coalition of Patient Groups

Kristin Stephenson 03/06/2017

As policy makers are considering various options to modify or replace the Affordable Care Act (ACA), MDA is working to ensure that individuals and families affected by chronic, serious and life-threatening diseases maintain health care access and coverage.

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.

Advocacy

Volunteerism at its best

R. Rodney Howell 01/17/201702/22/2017

Here’s how I see it: If families are at the heart of everything MDA does, then volunteers are the lifeblood that energizes our every heartbeat. Bob Bennett and Dr. Chris Rosa exemplify not only the best of our volunteers, but also the best of people.

News, Advocacy

MDA Moves Newborn Screening Forward in Partnership with Cure SMA

Kristin Stephenson and Amanda Haidet-Phillips 09/26/201603/28/2017

This September as we recognize Newborn Screening Awareness month, we are proud to announce a new partnership with Cure SMA aimed at moving newborn screening forward for spinal muscular atrophy (SMA)—the leading genetic cause of death in infants. This is an exciting time for the neuromuscular disease community as decades of research are translating into . . .

Advocacy

Make Sure Your Voice is Heard. Vote!

Kristin Stephenson 08/26/201605/15/2023

Voting is a privilege of living in a democratic society, and, for people with disabilities, it is one of the most important ways to promote leaders that best represent your values. But the voice of the disability community is only as loud and as strong as the number of disability advocates that are registered to . . .

Research, Advocacy

Developments in SMA Highlight Connections Between Advocacy and Research

Kristin Stephenson and Amanda Haidet-Phillips 08/26/201605/25/2023

Every August is Spinal Muscular Atrophy Awareness Month, and this year we have a lot to celebrate. At the beginning of August, Biogen and IONIS Pharmaceuticals announced encouraging results from a late-stage clinical trial testing an experimental drug for infants with SMA type 1. The drug is called nusinersen and is designed to increase production . . .

Advocacy, Fundraising & Events

ABLE to Work: Building on the Achieving a Better Life Experience Act of 2014

Kristin Stephenson and Alex McArthur 06/16/201607/27/2017

Data released by the US Department of Labor this month showed that the unemployment rate for people with disabilities is more than double the unemployment rate of those who are considered able bodied. Many factors impact access to employment for those living with disabilities, including a system of benefits and services that are gained and . . .

Living with Muscular Dystrophy, Advocacy

Accessible Air Travel: An Important Element of Living Life Without Limits

Kristin Stephenson 04/04/201602/22/2017

In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the . . .

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Category: Advocacy

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

Researchers and MDA Speak Out on Capitol Hill Today

MDA Outlines Principles of Coverage for ACA Replacement with Coalition of Patient Groups

MDA Recommends SMA Be Added to Newborn Screening Nationwide

Volunteerism at its best

MDA Moves Newborn Screening Forward in Partnership with Cure SMA

Make Sure Your Voice is Heard. Vote!

Developments in SMA Highlight Connections Between Advocacy and Research

ABLE to Work: Building on the Achieving a Better Life Experience Act of 2014

Accessible Air Travel: An Important Element of Living Life Without Limits

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