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Lani Knutson
Oct 2, 20242 min read
Community Pulse: Legislative Priorities
Advocacy Advisory Council defines legislative priorities based on CMD Community survey results.
Kelly Berger & Avery Roberts
Oct 1, 20243 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.
Lani Knutson, Advocacy Team Leader
Aug 7, 20242 min read
Make Your Voice Heard - Vote!
One of the most important ways you can advocate is to vote.
Lani Knutson, Advocacy Team Leader
Jul 1, 20242 min read
Cure CMD Seeks Advocacy Advisory Council Members
Join a newly forming council to help direct legislative priorities for the CMD community.
Kassidy C.
Jun 27, 20243 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.
Lani Knutson, Advocacy Team Leader
Mar 19, 20245 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
Feb 1, 20242 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...
Cure CMD
Jul 31, 20231 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...
Lani Knutson, Advocacy Team Leader
Jul 24, 20232 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
Rachel Alvarez
Jun 13, 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.
Lani Knutson, Advocacy Team Leader
Apr 4, 20221 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...
Rachel Alvarez
Feb 24, 202211 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.
Lani Knutson, Advocacy Team Leader
Sep 3, 20212 min read
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, 20213 min read
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, 20212 min read
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, 20201 min read
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, 20202 min read
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, 20202 min read
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...
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