I’ve received several questions about what you can do to help promote awareness for Myasthenia Gravis. If you notice the photo on my website, you’ll see some of the things my family and friends did to support me during Myasthenia Gravis Awareness Month last June. That photo still brings me tears.
Let me first say that you don’t need to wait until June to promote MG awareness. It can be done at any time. In fact, there are awareness activities happening all the time, all around the country. June just happens to be the month when you’ll see the most activity.
If you’re really interested in getting involved, I’d highly recommend you check out the MGFA website at https://myasthenia.org . They have all kinds of information to assist you. My family used some of the tips found on that site, but also came up with a few of their own.
One of the most popular ways was the support bracelets you see many of the people wearing in the photos on my website. These went over big. My daughter found and purchased them from Amazon.
I’m sharing an affiliate link to these bracelets with you: https://amzn.to/3Mw9eSf
You’ll notice I said “an affiliate link”. I’ve recently become an Amazon Associate, so you may periodically see links to an Amazon product in my blogs. That doesn’t mean my blogs will now be filled with advertisements and promotions. It just means that if there is a product I have used and decide to recommend, I may include a link to that product in my blog. Should you decide to click on that link and purchase that specific item within 24 hours of viewing it, I will receive a small commission.
Please understand, I’m not writing these blogs for the money. I’m writing them because I hope they will help people and writing them is therapy for me. Any commissions I may receive just helps me pay the expenses associated with publishing my blog website.
In the photos on my websites, you also saw many of my family members wearing Myasthenia Gravis Awareness t-shirts. There are numerous designs available from Amazon or a host of other companies. Just find which slogan best describes you.
One of the MG Awareness activities I’ve always wanted to do, but have not yet done, is participating in one of the many MG Walks conducted around the country. Three of the most popular are walks in Boston, New York, and Tampa Bay. I think it would be fun to participate and mingle with other MG supporters in one of these walks. I’ve even thought about trying to organize a walk where I live. I know it takes a lot of work and coordination, but I’m sure the good people at MGFA would be glad to give me a few pointers.
There’s also the National Patient Conference. In 2025, it will be held in Phoenix on March 23-25. It’s the largest gathering of the MG community and includes people living with MG, caregivers, family members, and MG experts, including researchers, physicians, and other medical professionals. I have it on my bucket list to attend someday, and who knows, maybe 2025 will be the year to do it.
You can also help by becoming a voice for MG by:
- Writing to Congress to ensure rights for rare disease patients
- Submitting and obtaining government proclamations recognizing MG
- Driving important alerts to your community to build awareness
- Joining efforts to influence insurance carriers to appropriately cover MG patients
- Pitching journalists to drive awareness in the media
- Meeting with political figures to communicate the needs of those with MG
As you can see, there’s a whole host of things you can do to help raise awareness for Myasthenia Gravis. All it takes is a little effort and the desire to do something good. If you have already organized or participated in some MG awareness activities, let me know what you did and I’ll be glad to include it in one of my blogs.
Hmmmm… maybe one of us should come up with an idea where all the readers of my blogs could participate in an awareness activity together…
Together we can remain #MGStrong!