Multiple System Atrophy Advocacy
A part of The Multiple System Atrophy Coalition’s® mission is to advocate and create awareness for issues affecting those with MSA. In order for the MSA Coalition’s advocacy efforts to be most effective it is essential that many members of the community participate. While The MSA Coalition can lead this effort, elected officials need to hear from their local constituents as well.
Being vocal about Multiple System Atrophy with elected officials is critical to passing legislation that is supportive of rare disease issues. As a rare disease community it is very important that our Congressmen and Senators be aware that they have constituents suffering from MSA.
Every year, important health legislation is being discussed and passed by our Nation’s government. The MSA community, with the MSA Coalition in lead, needs to create noise so elected officials will keep multiple system atrophy in mind as they debate and vote on healthcare policy that affects MSA and other rare diseases. If none of their constituents ever mention the struggles of MSA, they are much less likely to listen or care when important rare disease legislation is debated.
Here are some ideas that you can write or call your elected officials to discuss:
- Tell them what MSA is, how long it took to get diagnosed, and how impacts your life
- Talk about the symptoms of MSA and how disabling they can be.
- Ask them to support legislation that promotes research into rare diseases or that improves reimbursement for rare diseases.
- Tell them about the difficulties in qualifying for government disability when you have a rare disease.
Here are two links to websites that make it easy to call or email your elected officials: