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CMD Moms Share Their Journeys This Mother’s Day
In honor of Mother’s Day 2025, Cure CMD asked five incredible mothers to reflect on caregiving, resilience, and the unexpected joys of...
James Immekus
May 17 min read


Cure CMD’s Kelly Berger Spotlighted by University of Kentucky for Her Advocacy in Rare Disease and Disability Communities
Cure CMD’s Community Engagement Manager and tireless advocate for the rare disease and disability communities, was recently featured by her Alma mater's campus magazine, the University of Kentucky’s UKNow.
James Immekus
Apr 301 min read


Advocacy Alert: Recent Changes at HHS Could Threaten CMD Research
Click the button at the bottom of the page to mail your representative now! On April 1, the U.S. Department of Health and Human Services...
Lani Knutson
Apr 81 min read


2025 Rare Disease Week Recap
CMD Advocates gathered in Washington, DC to honor, celebrate & champion for those living with rare disease.
Kelly Berger & Avery Roberts
Mar 113 min read


A Message from Cure CMD’s Advocacy Team Lead
The Cure CMD Legislative Advocacy team, along with our advocacy partners, continue to actively monitor developments and will provide updates
Lani Knutson
Feb 121 min read


Cure CMD Receives 2024 MDA Advocacy Collaboration Grant
Cure CMD Receives 2024 MDA Advocacy Collaboration Grant
Lani Knutson
Feb 51 min read


Community Pulse: Legislative Priorities
Advocacy Advisory Council defines legislative priorities based on CMD Community survey results.
Lani Knutson
Oct 2, 20242 min read


Affected Individuals Flourish with an Overseas Exchange Opportunity
CMD affected individuals are given the opportunity to visit overseas through a foreign exchange arranged by community members.
Kelly Berger & Avery Roberts
Oct 1, 20243 min read


Make Your Voice Heard - Vote!
One of the most important ways you can advocate is to vote.
Lani Knutson, Advocacy Team Leader
Aug 7, 20242 min read


Cure CMD Seeks Advocacy Advisory Council Members
Join a newly forming council to help direct legislative priorities for the CMD community.
Lani Knutson, Advocacy Team Leader
Jul 1, 20242 min read


Youth Advocate Attends First Virtual Hill Day
I had the opportunity to kick off my rare advocacy journey and experience my first Capitol Hill Day.
Kassidy C.
Jun 27, 20243 min read


2024 Rare Disease Week Recap
Cure CMD’s Advocacy Lead, Lani Knutson, provides a recap of events for Rare Disease Week on Capitol, February 25 — 29, 2024.
Lani Knutson, Advocacy Team Leader
Mar 20, 20245 min read


Cure CMD Awarded 2nd MDA Advocacy Grant
LAKEWOOD, CA — February 1, 2024 — Cure CMD is excited to be one of the seven recipient organizations of the Muscular Dystrophy...
Lani Knutson, Advocacy Team Leader
Feb 1, 20242 min read


CMD Community Members Fan Out to Spread Awareness
Two recent sporting events supporting CMD awareness and community.
Cure CMD
Jul 31, 20231 min read


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, 20231 min read


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...
Cure CMD
Jul 31, 20231 min read


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
Lani Knutson, Advocacy Team Leader
Jul 24, 20232 min read


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.
Rachel Alvarez
Jun 13, 20232 min read


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...
Lani Knutson, Advocacy Team Leader
Apr 4, 20221 min read


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.
Rachel Alvarez
Feb 24, 202211 min read
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