We want to close out Multiple System Atrophy Awareness Month by making the unified voice of the MSA community heard in Washington, DC and elsewhere! Writing letters to your elected officials about multiple system atrophy is an important way to spread awareness and to help ensure our lawmakers keep rare disease research in mind as they pass legislation.
Your letter doesn’t need to be long, fancy or perfect. In fact, we have already provided an introduction, an explanation of MSA and a closing request. All you need to do is fill in your story. Write with your heart about how MSA has impacted your life as a patient, caregiver, family member, friend or healthcare provider. Here are a few tips and ideas for your letter:
- Tell them where you live so the elected officials know you are their constituent (very important)
- Tell them about the difficulties you faced in the process of being diagnosed with multiple system atrophy
- Tell them how multiple system atrophy has impacted your life (physically, mentally, financially, etc.)