• November 21, 2022
• Jen Tozer
• Uncategorized

The fifth webinar in the series, “Amplifying the NM Community’s Voice”, focuses on why genetic confirmation matters for treatments. Featured speakers...

• November 12, 2022
• Jen Tozer
• AFBSNemaline MyopathyRESEARCH

Supporters, friends, AFBS Board Members and NM families joined together on November 5, 2022 in New York City to celebrate our...

• September 28, 2022
• admin
• AFBSNemaline MyopathyRESEARCH

The fourth webinar in the series, “Amplifying the NM Community’s Voice”, focuses on the pathway to a Natural History Study for...

• August 9, 2022
• admin
• Nemaline MyopathyRESEARCH

A few years ago, AFBS funded a very ambitious project by Dr. Jim Dowling (SickkidsChildren’s Hospital, Canada) exploring the potential application...

• July 28, 2022
• admin
• Nemaline MyopathyNM AdultNM in SchoolNM ParentYouth with NM

The Nemaline Myopathy community joined together in person and virtually for the 2022 SciFam Conference this summer in Nashville, Tennessee, for...

• May 24, 2022
• admin
• Nemaline MyopathyRESEARCHVideo

The third webinar in the series, “Amplifying the NM Community Voice”, focuses on Part 2 of Research Fundamentals. Resources Included: Toolkit...

• May 2, 2022
• admin
• Nemaline MyopathyRESEARCH

The second webinar in the series, “Amplifying the NM Community Voice”, focuses on Research Fundamentals. The webinar includes defining PCOR (Patient...

• March 15, 2022
• admin
• AFBSNemaline MyopathyRESEARCH

AFBS’ Youth Ambassador shares a brief summary of the first webinar in the series, “Amplifying the NM Community’s Voice”. The webinar...

• January 31, 2022
• admin
• AFBSNemaline Myopathy

PCORI and CZI awards lay foundation for game-changing growth and research momentum for Nemaline Myopathy

• December 8, 2021
• admin
• RESEARCH

With limited resources and low interest for rare diseases, research funded by A Foundation Building Strength (AFBS) is designed to make...