Get Involved

At A Foundation Building Strength, we believe that every individual has a vital role to play in accelerating research, providing support, and building a stronger future for the Nemaline Myopathy (NM) community. This page is your comprehensive guide to getting involved, whether you’re a supporter looking to donate or fundraise for groundbreaking rare disease research, or an affected individual or caregiver seeking essential resources like community support, educational materials, and opportunities to participate in our ongoing efforts to find treatments. Join us; your involvement truly matters!

Support the Ongoing Work of A Foundation Building Strength

Check out the various ways to get involved below and help us work toward our vision of a stronger tomorrow.

We are the leading organization in the world funding research specifically for Nemaline Myopathy, but we can’t do it without your help. 100% of your donation goes directly to supporting groundbreaking research initiatives.

MAKE A GIFT

Our monthly giving community, Circle of Strength, is for those who want to make an ongoing commitment to Nemaline Myopathy research. AFBS is commitment to investing in high-quality research that meaningfully moves the needle forward, and to support our NM community and families.

With 100% of your donation going to research, you’re making a significant difference every single month. 

JOIN NOW

  • The options are endless for you to host a fundraising event for us, in person or online. The best part is, we’ve got all the tools to make it a fun and easy process. Whether your event is big or small, your dedication to finding treatments for Nemaline Myopathy makes all the difference.
  • Participate in current and upcoming AFBS fundraising events. Check out our Events page to see how you can help!

If you are interested in donating shares or other assets to A Foundation Building Strength (AFBS), you can utilize the following information:

Merrill Lynch Wealth Management
Merrill Lynch, Pierce, Fenner & Smith Inc.
101 California St. Suite 21
San Francisco, CA 94111

AFBS’ Account Number with Merrill Lynch is: 6CA04123
For electronic transfers, our Depository Trust Company (DTC) number is: 8862
This is the most secure and cost-effective way to process your gift.

Did you know you can double your support, without even giving a dollar more? You can if your employer participates in our Matching Gifts program.

Many corporations match employee donations to our organization. If you volunteer with us, your employer may also provide us with a grant as a way to recognize your ongoing support.

Matching Gift and Volunteer Grant information provided by
Powered by Double the Donation

At AFBS, we are dedicated to finding treatments for Nemaline Myopathy (NM) while supporting the NM community. Our work is only possible because of the generosity and commitment of our partners. We invite you to join us in our mission to advance important research and improve the lives of those affected by NM.

LEARN MORE

Community Resources for NM Affected Individuals and Caregivers

Learn more about Nemaline Myopathy, find support groups, meet community members, join gatherings, tune into webinars, and help us advance research. You can connect with the NM community in many ways:

Connecting with others on a similar journey is a powerful support! Here are some helpful pages and groups that you can follow and join:

  • Sign up for the AFBS e-newsletter to get updates on news, research, events and more
  • Complete the AFBS NM Contact Survey so that we connect you with relevant resources and possible future research study opportunities.

  • Join our Retrospective Digital Natural History Study by signing up with Citizen Health! You’ll gain the added benefit of centralizing your entire medical history in one convenient digital location, complete with a cutting-edge AI tool to query your medical records. Your de-identified data will help us gain a deeper understanding of Nemaline Myopathy.
  • Complete the AFBS Perspectives & Priorities Survey to help develop resources for the NM community, contribute valuable data about Nemaline Myopathy to research and clinical community, and help shape the future of NM research!
  • Join the Muscle Disease Registry: Register with the CMDIR to help give scientists the data and tools they need to perform necessary and important NM research.
  • Get sponsored, no charge Genetic Testing to confirm your diagnosis: Fill out this short interest form to get started and a dedicated member of our staff will reach out to assist you. Contact stacy@buildingstrength.org for additional support.
  • Donate tissue samples to the Beggs Lab NM Biobank for use in NM research. Fill out this interest form or contact Stacy.Cossette@childrens.harvard.edu for next steps
  • Make sure your clinicians are using the ICD-11 medical code for Nemaline Myopathy: G71.21

  • AFBS often features members of our NM community as part of our “Faces of NM” series, showcasing the diverse and incredible individuals that live with Nemaline Myopathy. If you’d like to be featured as one of our “Faces of NM” profile subjects, please fill out this questionnaire and tell us about yourself!
  • Request your free Nemaline Awareness Packets, each packaged with a fun sheet of stickers! These 5×7 packets are perfect to give out for free or as part of a fundraiser to raise awareness during NM Awareness Month (May) and all year long! Fill out this quick form to request yours now.

  • Download The Care of Congenital Myopathy: A Guide for Families, a comprehensive care guide for families and physicians.
  • Download and print a set of NM Awareness Cards. These informative cards are a helpful tool to share with curious on-lookers, new acquaintances, or anyone that is not aware of what NM is. This card will help bring more awareness to NM in your community. You may also request complimentary cards directly from AFBS by filling out this form.