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Alliance Against HMERF, Inc.
The Alliance Against HMERF, Inc. is a nonprofit organization dedicated to accelerating scientific discovery and advancing therapeutic development for Hereditary Myopathy with Early Respiratory Failure (HMERF), an ultra-rare and progressive form of muscular dystrophy. Born from one family's personal journey and supported by so many other similar stories, Alliance Against HMERF is driven by a global vision to fund groundbreaking research, connect the patient community, and champion awareness to ensure that no one faces this disease alone.
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Organization Overview
LAGRANGE, GA 30241-8834
Grants Received by Year
This organization is a grant recipient. See Funding Received below for details.
IRS Classification Codes
The National Taxonomy of Exempt Entities (NTEE) code is a four digit code used to classify an exempt IRC 501(c)(3) organization.
Subsection Codes are the codes shown under section 501(c) of the Internal Revenue Code of 1986 which define the category under which an organization may be exempt.
Asset Codes relate to the amount of assets shown on the most recent Form 990 series return filed by the organization.
Affiliation Code defines the organizational grouping.
Deductibility Code signifies whether contributions made to an organization are deductible.
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Funding Received
Verified from IRS Form 990 Schedule I filings by this organization's funders - 1 grant from 1 funder, 2021.
Funders, amounts, and purposes are available to GrantWatch MemberPlus members. Upgrade to view.
About the Organization
- Organization category
- Public Charity
- Mission
- The Alliance Against HMERF, Inc. is a nonprofit organization dedicated to accelerating scientific discovery and advancing therapeutic development for Hereditary Myopathy with Early Respiratory Failure (HMERF), an ultra-rare and progressive form of muscular dystrophy. Born from one family's personal journey and supported by so many other similar stories, Alliance Against HMERF is driven by a global vision to fund groundbreaking research, connect the patient community, and champion awareness to ensure that no one faces this disease alone.
- Programs or services
- Alliance Against HMERF's sole financial focus is on developing a medical treatment for HMERF muscular dystrophy. To date, we have funded >$250,000 in medical research and we're half way there. We have also created communities where HMERF patients can talk and share their stores.
- Detailed programs
- Developed an ASO targeting the damaged exon on the titin protein chain and completed Stage 1 testing with a proof-of-concept outcome.
- Target Audience
- Hereditary Myopathy with Early Respiratory Failure; Myofibular Myopathy 9
- Geographic Focus
- Global
- Current projects
- Seeking funding for Stage 2 research to identify efficacy and toxicity of our proof-of-concept ASO.
- Organization goals
- Our goal is simple and clear: find a treatment to slow, stop and ultimately restore damaged muscle tissue created by damage to an exon on the titin protein chain.
- Leadership
- Christine Garner-Duane, CEO/Ex. Director: chris.duane@fighthmerf.og
Rodney Bowling Jr, PhD, Chief Science officer, Alpharose Labs: rodney@alpharose.com
Funding Needs
- Funding needs
- Stage 2 funding: ~$85,000 to conduct organoid testing for efficacy and toxicity of our ASO.