AFBS Nemaline Myopathy Research Grants (RFA)

AFBS Nemaline Myopathy Research Grants

Organization Type: 501(c)3 nonprofit (Tax ID: 26-1761329)
Geographic Scope: Not specified; appears to accept applications from researchers at academic medical centers, universities, and relevant industry entities

Program Overview

A Foundation Building Strength invests in high-impact, strategically aligned research to accelerate therapeutic development for Nemaline Myopathy (NM). This Request for Applications (RFA) represents a significant commitment to fuel innovative projects that address key research priorities identified by AFBS's Scientific Advisory Board.

Award Details:

• Up to five grants of $100,000 per year
• Funding duration: Up to three years
• Total possible award: Up to $300,000 per grant over the three-year period

Focus Areas

The foundation prioritizes research in the following strategic areas:

1. Small Molecule Research & Drug Screening
   • Identifying and validating small molecule therapies
   • High-throughput screening of existing and novel compounds
   • Preclinical development of promising candidates
   • Compounds that can alleviate symptoms or modify disease progression
2. Gene-Targeted Therapies
   • Genetic interventions to correct or compensate for NM-causing mutations
   • Research to improve gene delivery and expression
   • Enhanced therapeutic efficacy strategies
3. Bulbar Weakness & Respiratory Function
   • Investigating NM-associated bulbar dysfunction (affecting speech and swallowing)
   • Developing interventions to improve respiratory function
   • Therapeutics, devices, and rehabilitation strategies
4. Supportive Care Devices & Functional Outcomes
   • Creating devices that enhance mobility, respiratory support, and daily functional abilities
   • Exploring assistive technologies
   • Developing reliable outcome measures to assess treatment effectiveness

About Nemaline Myopathy

Disease Characteristics:

• Rare genetic neuromuscular disorder
• Causes muscle weakness and decreased muscle tone (hypotonia)
• Severity varies widely from mild symptoms to severe disability and life-threatening complications
• Affects individuals of all ages and genetic subtypes

Impact Areas:

• Mobility and strength
• Breathing and respiratory function
• Speech and swallowing
• Daily functional abilities

Eligibility

• Researchers at academic medical centers
• University-based researchers
• Relevant industry entities
• Investigators whose work aligns with AFBS's strategic priorities

Scientific Guidance

The program is guided by AFBS's Scientific Advisory Board, consisting of:

• Dr. Alan Beggs, Co-Chair (Boston Children's Hospital & Harvard University)
• Dr. Gina Ravenscroft, Co-Chair (Harry Perkins Institute of Medical Research)
• Dr. Lindsay Alfano (Nationwide Children's Hospital & Ohio State University)
• Dr. A. Reghan Foley (Neuromuscular and Neurogenetic Disorders of Childhood Section, NINDS, NIH)
• Adrian Gomez (Ramboll, Parent Advocate)
• Lucinda Lee (Patient Advocate)
• Dr. Coen Ottenheijm (Amsterdam UMC & University of Arizona)
• Wayne Sackett (Estuary Biotherapeutics)
• Dr. Nicol Voermans (Radboud University Medical Center)

Current Status

As of May 29, 2026, the most recent RFA cycle is now closed. AFBS welcomes inquiries and concept discussions from investigators whose work aligns with their strategic priorities.

Application Process

For complete RFA details and application instructions, please visit the AFBS Research Funding page at: https://buildingstrength.org/community/advance-research/request-for-applications/

Current Status: The most recent Request for Applications (RFA) cycle is now closed.

For Future Opportunities

Prospective applicants are encouraged to:

1. Contact the Scientific Director for concept discussions and future funding opportunities
   • Gustavo Dziewczapolski, PhD
   • Email: gustavo@buildingstrength.org
2. Inquire about potential collaboration or future funding cycles
3. Ensure alignment with AFBS's strategic research priorities before submitting proposals

Note: Specific application materials, submission requirements, and narrative questions are not detailed in the currently available information. Applicants should contact the Scientific Director or visit the Research Funding page for complete application details when a new RFA cycle is announced.