2023 EOY Report
The OPMD Association, an all-volunteer, donor-funded organization appreciates the generosity of our donors and volunteers. Our Mission is to advocate for and serve people affected with Oculopharyngeal Muscular Dystrophy (OPMD) by providing education, resources, and programs and by creating partnerships with research institutions and corporations in order to discover treatments and a cure for OPMD.
OPMD Association 2023 Accomplishments
On August 18, 2023 the OPMD Association celebrated our first year as a 501(c)(3) advocacy nonprofit. We gratefully acknowledge support of the OPMD Community, nonprofit and clinical partners, and our donors in these notable OPMD Association accomplishments:| 2023 Accomplishments |
|---|
|
Launched OPMD website |
|
Awarded 2023 MDA Advocacy Collaboration Grant |
|
Featured patient advocacy booth at MDA Clinical & Scientific Conference |
|
Accepted membership in the MDA Neuromuscular Advocacy Collaborative |
|
Received Global Genes 2023 RARE Disease Summit Grant |
|
Attended Global Genes RARE Disease Summit in San Diego |
|
Developed OPMD Community Registry: https://opmd.org/registry/ |
|
Expanded social media presence
|
|
Distributed first quarterly newsletter, OPMD Matters: https://opmd.org/contact/
|
|
Launched Volunteer Program: https://opmd.org/volunteer/ |
|
Developed proprietary OPMD Association Database |
|
Established OPMD Advocacy Initiative |
|
Met with Legislators in Washington D.C. |
What does OPMD Association year two look like?
| 2024 Projects and Goals |
|---|
|
Conduct and publish OPMD Community Research Study results |
|
Participate in Global Genes Rare-X Registry Project |
|
Expand OPMD Advocacy Initiative |
|
MDA sponsored OPMD Community Training webinar, RARE Disease Day, February 29,2024 |
|
Publish OPMD fact sheet |
|
MDA Clinical & Scientific Conference, March 3-6, 20224 |
|
Expand OPMD Website Resources (clinical network, equipment list, helpful links) and introduce
Tips & Tricks |
|
Add Caregivers’ Corner resource page on the OPMD website |
|
Continue to grow social media presence |
|
Launch Grassroots Community Advocacy Program |
|
Apply for research and marketing grants |
|
Recruit an OPMD Champion |
Support the OPMD Community
- Give of your time as a Volunteer
- Donate to support OPMD causes
- Spread the word about OPMD
Find us on social media!
