At the Myasthenia Gravis Association (MGA), we believe that every voice counts, and your involvement can make a real difference in the lives of those living with myasthenia gravis (MG). Advocacy, awareness, and fundraising are key pillars in our mission to support individuals with MG and advance research for better treatments. Here's how you can get involved and help us make an impact.
Why Advocacy Matters
Advocacy is about more than just raising your voice; it’s about ensuring that the needs of the MG community are heard by policymakers and the public. When we advocate together, we have the power to influence legislation, secure funding for research, and bring attention to the challenges faced by those living with MG.
Raising Awareness
Awareness is the first step towards change. By educating others about MG, we can help reduce the stigma associated with rare diseases and promote understanding. There are many ways you can help spread the word:
Social Media Campaigns: Share information about MG on your social media platforms or repost others, like the MGA's, social media post. Use hashtags like #MGStrong and #MyastheniaGravis to connect with a broader audience.
Community Presentations: Host or participate in events where you can educate your community about MG. Share your story with others by taking it to pen and paper for others to read. Email us if you would like to share your MG Journey online!
Media Outreach: Write letters to your local newspapers or contact TV and radio stations to share stories about living with MG.
Fundraising Events
Fundraising is crucial for supporting MGA's programs and research initiatives. Whether you participate in a walk, host a bake sale, or create an online fundraiser, every dollar raised brings us closer to a cure. Keep an eye out for upcoming fundraising events in your area or consider organizing one yourself!
Get Involved in Advocacy: Rare Across America
Over the past two weeks, MGA had the incredible opportunity to participate in Rare Across America, hosted by the EveryLife Foundation for Rare Diseases. This event was a significant platform where we shared the impacts of living with MG, connecting directly with the staff of Senator Eric Schmitt (MO) and Representative Emanuel Cleaver (MO). These discussions are vital in bringing attention to the unique challenges faced by the MG community and advocating for policies that support rare disease patients.
Upcoming Events and How You Can Participate
Here’s how you can get involved in the MG community:
Join a Local Support Group: Connect with others who understand what it’s like to live with MG. Sharing experiences and advice can be incredibly empowering.
Attend Advocacy Events: Participate in events like Rare Disease Week or local advocacy days. These events are great opportunities to meet with lawmakers and share your story.
Volunteer: Whether it’s helping out at a fundraising event or assisting with an awareness campaign, your time and skills are invaluable to MGA.
Take Action Today
Your involvement in advocacy, awareness, and fundraising efforts can make a tangible difference in the lives of those living with MG. Together, we can ensure that our voices are heard and that the needs of the MG community are met. Stay informed about upcoming events and opportunities to get involved by following MGA on social media and checking our website regularly.
Let’s continue to raise our voices, spread awareness, and advocate for a better future for everyone living with myasthenia gravis. Thank you for your continued support!
By participating in advocacy and awareness activities, you not only support the MG community but also help to create a world where rare diseases are better understood and treated. We look forward to working alongside you to make this vision a reality.
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