Cure CMD Advocacy Team Update

I gave up on making resolutions years ago. I usually abandon them within weeks. However, I can't help taking time at the end of the year to reflect and make a plan for the coming year. I learned a lot in 2020 (what a doozie!), and I don't want those lessons to go to waste. This year, I'm calling my goals my New Years Intentions.

One Intention is to be more proactive about advocacy. You may think I'm crazy to want to be involved in politics right now (eek!), but advocacy isn't just about politics. Below you will find a few ways you can be involved at the federal, state, and local level. What can you do this year to advocate for yourself, your family, or your community? Every little bit helps!

Be well,

Lani Knutson, Advocacy Team Lead

Federal

Attend monthly Rare Disease Legislative Advocates (RDLA) webinars to learn about current legislative efforts on behalf of the Rare Disease community. Sign up for the next one on January 28th here.

Ask your Senators and Representative to join the Rare Disease Congressional Caucus so they stay up to date on Rare Disease issues.

If you are 18-29 years old, enroll in The Young Adult Representatives of RDLA (YARR) YARR Leadership Academy, a series of on-line courses offered to a select group of young adults in the rare disease community.

Meet with your federal legislators during Rare Across America or Rare Disease Week this year.

Attend Rare on the Road to learn more about how to advocate.

Email or call your federal legislators and tell them what issues are important to you as a member of the Rare Disease and Cure CMD communities.

State

Attend RDLA's first ever State Advocacy Webinar on January 21 at noon EST.

Join the Rare Action Network (RAN) in your state.

Learn about the efforts to establish a Rare Disease Advisory Council (RDAC) in all 50 states. Learn how you can help!

Email or call your state legislators and tell them what issues are important to you as a member of the Rare Disease and Cure CMD communities.

Local

Organize a Rare Disease Day event (COVID safe, of course!).

See if your city or town had a committee devoted to people with disabilities or an equity and inclusion committee. Volunteer to be on the committee!

Organize or help with a project that increases accessibility in your community such as an inclusive playground or adaptive sports center.

TELEHEALTH STORIES WANTED!

Have you and your family been using Telehealth during the pandemic? If so, we want to hear your experiences! Your stories will help focus our advocacy work relating to Telehealth in the coming months and years.

Email Lani Knutson to share your experience.

Know someone who would like to join the Cure CMD Advocacy Team? Email us and we'll add them to the list!