Advocacy plays a crucial role in raising awareness for Myasthenia Gravis (MG), advancing research, and improving the lives of those affected by this rare condition. By becoming an advocate, you amplify the voices of the MG community and contribute to meaningful change. Here are ways you can get involved and make a difference through advocacy and by supporting the Myasthenia Gravis Association (MGA).
Raise Awareness Locally and Nationally
Awareness is the foundation of advocacy. Educating others about MG helps foster understanding, reduce stigma, and build support for those living with the condition. Here are some ways to spread the word:
Social Media Campaigns: Share educational posts, personal stories, or MGA resources on your social platforms using hashtags like #MGAwareness, #Ihaveherdofmg, #worldwithoutmg and #MGStrong.
Community Presentations: Speak at local events, schools, or community groups about MG and its impact.
Proclaim MG Awareness Month: Collaborate with local officials to officially recognize June as Myasthenia Gravis Awareness Month in your city or state. Look for businesses that organize "Give Back" events or buildings that may change their light colors.
Support Legislative Efforts
Advocating for legislative changes can lead to better healthcare policies and funding for MG research. You can support these efforts by:
Contacting Legislators: Reach out to your representatives to share your MG story and request their support for rare disease initiatives. You can use this link to search for your representatives using your zip code.
Participating in Advocacy Days: Attend rare disease advocacy events, such as Rare Disease Day at your state’s capitol or on Capitol Hill. February is Rare Disease Month, see if there is an event near you or plan one yourself!
February 5: Annual Rare Disease Symposium in Boston
February 20: Washington University School of Medicine Rare Disease Day Virtual and in Saint Louis
February 26: CHOC & UCI Rare Disease Symposium & Family Conference Virtual
February 27-28: 2025 FDA-NIH Rare Disease Day Virtually and in Maryland
February 28: CHOC & UCI Rare Disease Symposium & Family Conference in Irvine, CA
March 6: Rare Disease Day 2025 at the University of Minnesota Virtual and in-person
Signing Petitions: Join efforts to promote MG-focused policies by adding your signature to relevant petitions. You can sign up for NORDs RareAction Network to receive news and information on what the network is taking action on and participate in the network’s Calls to Action.
Engage in MGA’s Advocacy Initiatives
The Myasthenia Gravis Association provides numerous opportunities for individuals to get involved in advocacy:
Volunteer Programs: Help organize events, distribute educational materials, or provide peer support within the MG community. If you are looking to volunteer your time, email info@mgakc.org for more information and to allow us to determine the best fit! We have volunteer opportunities at our awareness events as well as within our office.
Awareness Events: Join MGA-hosted walks, fundraisers, and public awareness campaigns to spread the word about MG.
May 2025: MGA Triple Crown Showdown 5k Run/Walk & Tot Trot | Leawood, KS
June 2025: Snowflake Saturday | Various Locations
August 2025: Crown Town Trivia Night | Kansas City, MO
Connect with Advocacy Organizations
Partnering with other advocacy groups amplifies the impact of your efforts. Organizations like the Rare Disease Legislative Advocates (RDLA), EveryLife Foundation for Rare Diseases, and the National Organization for Rare Disorders (NORD) offer tools, training, and platforms to support your advocacy journey.
Share Your Story
Personal stories have the power to inspire and influence change. If you would like yo share your story with the MGA, email us! Consider:
Writing Blog Posts: Share your experiences on MGA’s website or personal blogs.
Speaking or Attending Events: Represent the MG community at local or national conferences.
Joining Social Campaigns: Participate in MGA’s initiatives that feature patient and caregiver stories.
Encourage Others to Join
Advocacy is stronger in numbers. Invite family, friends, and coworkers to:
Attend MG awareness events.
Share educational resources within their networks.
Advocate alongside you for MG-related causes.
Your Voice Matters
Advocacy is a powerful tool that connects individuals, builds community, and drives progress. Whether you’re sharing your story, contacting legislators, or raising awareness, your efforts contribute to a brighter future for those living with MG.
Ready to get started? Visit the Myasthenia Gravis Association’s website for more information on how you can take action today. Together, we can create a world where MG is better understood and supported.
Comments