Caregiving Toolkit

Stuck Inside: A National Report on Caregiving for Individuals with Spinal Muscular Atrophy, shares numerous first-person experiences and quotes highlighting the essential role caregivers play in the lives of children and adults with SMA. In conjunction with this report, Cure SMA has developed this caregiving toolkit with resources to help raise awareness about the caregiving needs of the SMA community, especially with your state and federal legislators.

Instructions to Set-up Congressional Meetings

  • Send your meeting request at least 3 weeks prior to your desired meeting date.
  • Use the “Find Officials” search bar located on Cure SMA’s Advocacy Action Center to find the local office location and email of your Members of Congress. (You can also email [email protected] if you want the contact information for the scheduler or a particular staff person for the Member of Congress.)
  • Use Cure SMA’s State Fact Sheets, located on Cure SMA’s Advocacy Web Page, to tailor the letter with state-specific data.
  • Refer to Cure SMA’s DIY Video on How to Set Up A Congressional Meeting for additional guidance on requesting a meeting. Once the meeting is scheduled, please view the How to Structure a Congressional Meeting to assist you in organizing your meeting.
  • When sending your meeting request email, you should cut and paste your letter into the body of the email and attach a PDF copy of Cure SMA’s caregiving report.
  • After completing a meeting with your congressional office, send a thank you letter that repeats the “ask” from your invite letter.
  • Contact [email protected] to share details about your meeting or if there is a follow-up item you’d like Cure SMA to send to the congressional office.

Questions about the above resources? Reach out to Cure SMA Advocacy at [email protected].

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