It’s Nemaline Myopathy Awareness Month, and A Foundation Building Strength is excited to celebrate all May long! We’re raising awareness for this rare muscle disorder and fostering connections within the NM community.
Throughout the month, we have a huge variety of exciting events and resources planned to help shine a light on Nemaline Myopathy, all culminating in the very first Nemaline Awareness Day on May 31st!
Connect with Us!
Virtual Meetups: You’re invited! Register now to join one of our virtual meetups during Nemaline Myopathy Awareness Month, where members of the NM community can come together to connect, engage in conversations, ask questions, and learn from each other in a comfortable and inclusive environment, regardless of geographical location. Choose between Saturday, May 18th at 9 AM or Tuesday, May 21st at 5 PM. Be sure to register in advance and be entered to win an AFBS Swag Pack!
Spread Awareness on Social Media: We’ve created a collection of downloadable graphics you can use as your profile picture throughout May to raise awareness for NM. Download by clicking on the photo below and saving!
Share the Knowledge!
Free NM Awareness Packets: Get informed and spread information with our brand-new complimentary NM Awareness Packets. Each packet includes a 5×7 card with quick facts about Nemaline Myopathy and AFBS, along with a fun sticker sheet!
To claim your free packets, simply set up a personal fundraising page here and then fill out the quick request form here . You can distribute these packets to friends, co-workers, neighbors, and classmates to raise awareness, or use them as part of a fundraising activity!
Stay Tuned!
Throughout May, keep an eye out for even more exciting content from AFBS:
- Inspiring Community Profiles: We’ll be sharing stories from the amazing and diverse NM community. Want to share your story? Fill out our NM Awareness Month Feature Questionnaire!
- Research Updates: Stay informed about the latest advancements in research for Nemaline Myopathy.
- CMDIR Registration Information & Assistance: If you haven’t added your information to the Congenital Muscle Disease International Registry yet, this month is the perfect time! Your data can help propel research into treatments and therapies for Nemaline Myopathy forward.
- NM Fast Facts: Share these quick and informative social media posts to raise awareness within your network.
- New Merchandise Shop Launch: Look forward to brand new apparel designs featuring the softest and most comfortable t-shirts, sweatshirts, and tote bags! Online shop opening soon!
We invite you to join us in making this inaugural Nemaline Myopathy Awareness Month a huge success! Let’s work together to raise awareness, build connections, and support the NM community.