FDA Reauthorization Act Signed Into Law
MDA thanks Congress and the administration for working together in a bipartisan effort to pass the FDA Reauthorization Act.
Tag: Advocacy Updates
Join Us for an Accessible Air Travel Webinar with Southwest and Alaska Airlines
Join MDA and representatives from Southwest and Alaska Airlines on Thursday, Aug. 10 at 3 p.m. EDT for an informative conversation about accessible air travel. This webinar is a continuation of MDA’s collaborative accessible air travel efforts as we team up with representatives from the airline industry to discuss traveling with a disability and as we explore ways to help eliminate barriers to access.
Support Increased Federal Funding for NBS Programs
With a robust therapy development pipeline and more potential treatments moving forward, MDA believes it is critical that the national programs that support newborn screening efforts in every state have the necessary funding to help ensure all babies have access to life-changing and life-saving therapies.
Senate’s “Skinny Repeal” Bill Will Have a Huge and Harmful Impact on Health Care Coverage, Say 12 Patient and Provider Organizations
Twelve non-partisan patient and provider groups representing millions of Americans issued the following statement today on the “skinny repeal” legislation the Senate will consider this week.
Health Care Reform Update: Bill introduced in the U.S. Senate
The U.S. Senate introduced its health care reform bill that sets out changes to modify health care coverage of people across the country, including MDA families.
MDA Supports Robust NIH Funding
MDA remains committed to sharing with Congress and the Administration the many reasons why increased funding is critical to developing therapies for neuromuscular disease.
Advocating for the Whole Community Starts with Self-Advocacy: Reflections from the MDA Advocacy Conference
Spending time in our nation’s capital with dozens of other MDA families gave me a new sense of empowerment and taught me to apply a skill I’ve already honed in my personal life to the public policy arena. It was inspiring and exciting to see so many people come together in one place to do our part in making this country a better place for people who live with muscle-debilitating diseases.
MDA Response to U.S. House Passage of Health Care Reform Bill
Today the House passed the AHCA, which contains provisions that will impact the health care coverage of individuals and families that MDA serves.
MDA Families Take to Capitol Hill
A delegation of dozens of MDA advocates from 23 states visited more than 100 congressional offices on Capitol Hill earlier this week to speak to their representatives about the importance of programs and policies that help accelerate the development of treatments and cures for individuals and families living with muscular dystrophy, ALS and related neuromuscular diseases.
What is Advocacy and Why Should You Care?
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.
