CMD Community Members Fan Out to Spread Awareness
Two recent sporting events supporting CMD awareness and community.
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Cure CMD
- Jul 31
- 1 min
Team Cure CMD Raises $140K to Support CMD Research
This year, the MDBR's Team Cure CMD raised $140k for research.
Cure CMD
- Jul 31
- 1 min
Watch The Tenacity of Hope
The Tenacity of Hope is a documentary film by Cure CMD, in partnership with Living in the Light, to showcase members of the congenital...
Lani Knutson, Advocacy Team Leader
- Jul 24
- 2 min
Accessible Air Travel
By September 30, 2023, Congress must reauthorize the Federal Aviation Act (FAA). Changes can be made when an act is reauthorized, and advoca
Rachel Alvarez
- Jun 13
- 2 min
Cure CMD Releases New Film About the CMD Experience
Cure CMD's film, The Tenacity of Hope, features the raw and real experiences of those living with congenital muscular dystrophy.
Lani Knutson, Advocacy Team Leader
- Apr 4, 2022
- 1 min
Two-Minute Advocacy: Ensuring Telehealth Coverage
Telehealth services have been critical to maintaining safe and consistent access to health care for patients with rare diseases such as...
Rachel Alvarez
- Feb 24, 2022
- 11 min
Rare Disease Day Reflections: My Rare Disease Journey
Executive Director Rachel Alvarez shares a deep dive into her history as a rare disease patient, and what it means to lead Cure CMD.
Lani Knutson, Advocacy Team Leader
- Sep 3, 2021
- 2 min
Five-Minute Advocacy Update
Want to advocate on behalf of yourself or a loved one with CMD? Right now, several proposed U.S. bills exist that would benefit the CMD...
Cure CMD
- Sep 3, 2021
- 3 min
Co-pay Assistance Programs Essential to Patients and Caregivers
Ohioans have been focused on protecting their family from the COVID crisis. But that is not the only public health crisis facing...
Lani Knutson, Advocacy Team Leader
- Apr 30, 2021
- 2 min
STAT Act Aims to Speed Treatments for Rare Disease
Use the template here to urge your Congressperson to support it! In 1983, the U.S. Congress passed The Orphan Drug Act, a law that...
Terry Selucky
- Oct 16, 2020
- 1 min
Cure CMD Volunteer Charlene York Honored as NORD Rare Impact Awardee
Cure CMD would simply not be what it is today without the dedication, hard work, and commitment of our volunteers. They are the reason we...
Lani Knutson, Advocacy Team Leader
- May 2, 2020
- 2 min
Rare Disease Week - 2020 Report
The Cure CMD Advocacy Team was represented by 13 advocates at Rare Disease Week in Washington, D.C. during the last week of February....
Lani Knutson, Advocacy Team Leader
- Feb 15, 2020
- 2 min
2020 Rare Disease Day: Show Your Stripes
In the Congenital Muscular Dystrophy (CMD) world, we know our disease is rare. And if you look at the numbers in each subtype, the groups...
Lani Knutson, Advocacy Team Leader
- Jan 11, 2020
- 1 min
Cure CMD Advocacy Update - January 2020
Rare Disease Week 2020 If you are planning to attend Rare Disease Week on February, check out the Next Steps as you prepare to travel to...
Lani Knutson, Advocacy Team Leader
- Dec 4, 2019
- 2 min
Rare Disease Week 2020
If you plan to attend, your next steps are: Read Rob Sunris' blog post on last year's Rare Disease Week. Attend the Information Webinar...
Rob Sunris
- Nov 26, 2019
- 2 min
2020 Rare Disease Week: Join the Team
As part of the rare disease community, we are all advocates. We push for inclusion and accommodations at schools, teach our doctors...
Lani Knutson, Advocacy Team Leader
- Nov 10, 2019
- 3 min
Rare Disease Week November 2020
Rare Disease Week on Capitol Hill is February 25-28, 2020. The Cure CMD Advocacy Team is looking for more members to attend. Want to join...
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