L-CMD Research Foundation
L-CMD Research Foundation is a 501(c)(3) nonprofit founded in 2020 that funds and advances gene therapy research for LMNA-related congenital muscular dystrophy, a fatal pediatric disease affecting at least 200 children worldwide, and partners with Entos Pharmaceuticals on curative treatment development.
- Company typePrivate
- Founded2020
- HeadquartersHouston, United States
- Headcount—
- GTM typeB2C
- OfferingServices
What L-CMD Research Foundation does
L-CMD Research Foundation is a 501(c)(3) nonprofit organization founded in February 2020 by Hannah Lowe and Mark Corman in Houston, Texas, after their son Austin was diagnosed with LMNA-related congenital muscular dystrophy (L-CMD) at five months old. The foundation is dedicated to funding and coordinating scientific research aimed at developing treatments and ultimately a cure for L-CMD, a rare and fatal form of muscular dystrophy caused by randomly occurring DNA mutations in the LMNA gene that prevents affected children from achieving walking and leads to dramatically shortened lifespans due to progressive muscle weakness, particularly of the heart. At least 200 children worldwide are affected, and no treatments or cures currently exist.
The foundation's research focus centers on gene therapy approaches, including novel gene editing methods and muscle-targeted formulations. Its primary research partnership is with Entos Pharmaceuticals, announced April 2026, to co-develop a potentially curative therapy leveraging Entos's Fusogenix PLV non-viral drug delivery platform designed to enable redosable gene therapies. The foundation also participates in the CMDIR patient registry to support clinical trial readiness and structured patient data.
The organization operates a community-led go-to-market model, raising funds through grassroots campaigns (notably the '2 Before 2!' initiative), recurring fundraising events (silent auctions, cocktail parties, fitness classes, wine tastings, art auctions, neighborhood sales, and birthday fundraisers), and a diversified donation infrastructure that includes online portals (Givebutter, GoFundMe), direct mail, appreciated stock transfers via TD Ameritrade, cryptocurrency, IRA qualified charitable distributions, donor-advised funds, and corporate matching programs. Earned media coverage spans Good Morning America, ABC News, the Houston Chronicle, and podcasts including Once Upon A Gene. Cumulative funds raised exceed $2.5 million since founding. The foundation does not sell products or services and is governed by a Board of Directors.
L-CMD Research Foundation firmographics
Firmographics- Name
- L-CMD Research Foundation
- Legal name
- L-CMD Research Foundation
- Website
- https://lcmdresearch.org
- Company type
- Private
- Founded year
- 2020
- Operating status
- Operating
- Short description
- L-CMD Research Foundation is a 501(c)(3) nonprofit founded in 2020 that funds and advances gene therapy research for LMNA-related congenital muscular dystrophy, a fatal pediatric disease affecting at least 200 children worldwide, and partners with Entos Pharmaceuticals on curative treatment development.
- Ownership category
- akta.pro rank
L-CMD Research Foundation industry classification
Industry- Product category
- Nonprofit Medical Research Foundation
- NAICS
- Research and Development in Biotechnology (except Nanobiotechnology) (541714)
- SIC
- Services-Health Services (8000)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industry
- Health & Medical Research Grantmaking Foundations (BPAGAKAL)
Keywords
Where L-CMD Research Foundation is headquartered
LocationHeadquarters
- HQ city
- Houston
- HQ country
- United States
- HQ region
- North America
Markets served
L-CMD Research Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Marketing or Sales, Operations, Others
Revenue model
- Charitable Donations: Tax-deductible donations from individual donors supporting L-CMD research. Accepts donations via website, social media fundraisers, and direct contributions.
- Fundraising Events: Revenue from organized events including silent auctions, cocktail parties, fitness classes, art auctions, wine tastings, lemonade stands, and birthday fundraisers. Events are held both virtually and in-person across various cities.
- Stock and Crypto Donations: Accepts donations via appreciated stock, cryptocurrency, and donor advised funds (DAF). Stock donations can be made through TD Ameritrade with account details provided on the foundation's website.
- IRA and DAF Donations: Accepts qualified charitable distributions from IRAs and donations through donor advised funds for tax-advantaged giving.
- Corporate Matching and Sponsorships: Corporate donors and sponsors provide support. The foundation actively advocates for workplace charitable giving program inclusion.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels6 records
L-CMD Research Foundation product offering
Product offeringCore offering
L-CMD Research Foundation is a 501(c)(3) nonprofit that funds and coordinates scientific research into treatments and a cure for LMNA-related congenital muscular dystrophy (L-CMD). It runs community-driven fundraising campaigns, maintains a patient registry via CMDIR, and partners with biopharmaceutical researchers (notably Entos Pharmaceuticals) to advance gene therapy development using the Fusogenix PLV non-viral delivery platform.
Product overview
L-CMD Research Foundation is a 501(c)(3) nonprofit organization (EIN: 85-2640499) dedicated to funding scientific research for treatments and a cure for LMNA-related congenital muscular dystrophy (L-CMD), a fatal genetic condition affecting children. The foundation operates as a fundraising and research advocacy organization rather than a technology product company. Its core activities include running fundraising campaigns (such as the '2 Before 2!' initiative), facilitating research collaborations with scientific partners (including Entos Pharmaceuticals for gene therapy development), and providing resources and community support for affected families. The foundation does not offer software products, platforms, or technology services.
Differentiator
Problem solved
Functional benefit
Quantifiable outcome
- At least 200 children worldwide affected by L-CMD have no treatments or cures, representing the unmet medical need the foundation addresses.
Companies that use L-CMD Research Foundation
Customer profileSegments1 record
Ideal customer profiles2 records
L-CMD Research Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature3 records
L-CMD Research Foundation partnerships and signals
Strategic signalPartnerships
One partnership is on record.
- Entos PharmaceuticalscoreCollaboration to develop a potentially curative genetic therapy for LMNA-related congenital muscular dystrophy (L-CMD). The partnership combines Entos's Fusogenix PLV non-viral drug delivery platform with novel gene editing approaches and muscle-targeted formulations to create redosable gene therapies. The organizations aim to leverage emerging FDA regulatory pathways to accelerate development of treatments for this rare pediatric condition affecting at least 200 children worldwide.
Scale indicators3 records
Recent moves5 records
Expansion highlights5 records
L-CMD Research Foundation competitors and assessment
Company assessmentDirect peers
- Charley's Fund: Parent-founded nonprofit focused on Duchenne muscular dystrophy — closely mirrors the L-CMD Research Foundation's parent-led, single-disease, gene-therapy-oriented operating model and is a useful scale benchmark.
- Parent Project Muscular Dystrophy: Disease-specific nonprofit foundation funding Duchenne muscular dystrophy research and providing patient/family support — directly analogous operating model to L-CMD Research Foundation, with a more mature scale demonstrating the trajectory of such organizations.
- CureDuchenne: Disease-specific nonprofit funding Duchenne research, with strong ties to gene therapy developers and patient registries — operates a similar model to L-CMD Research Foundation but has built a more developed venture philanthropy arm.
- A Foundation Building Strength: Parent-founded nonprofit dedicated to collagen VI congenital muscular dystrophy (a related CMD subtype) — directly comparable disease-area, structure, and gene-therapy orientation, and a relevant peer for benchmarking fundraising maturity.
- Cure SMA: Spinal muscular atrophy-focused nonprofit that funded the research path to recently approved SMA gene-targeting therapies — the gold-standard comparable for a rare pediatric neuromuscular disease foundation that has translated funding into approved treatments.
- Coalition to Cure Calpain 3: Small patient-founded nonprofit funding calpainopathy/LGMD2A research — highly comparable in scale, mission (single rare muscular dystrophy subtype), and funding-driven operating model.
Others
- Entos Pharmaceuticals: Core technology partner developing the Fusogenix PLV non-viral delivery platform used in the L-CMD collaboration. Included as a peer because the foundation's therapeutic trajectory is materially tied to Entos's platform execution.
Emerging players
- SOLID Biosciences: Clinical-stage gene therapy company developing treatments for Duchenne and other neuromuscular diseases — comparable as a muscular-dystrophy-focused gene therapy developer with which the foundation's research efforts could eventually align.
Broad incumbents
- Muscular Dystrophy Association (MDA): The largest US muscular dystrophy advocacy and research-funding organization, covering many subtypes including CMD. Comparable as a fundraising/funding-orchestration entity, but operates at much larger scale and broader scope.
- Sarepta Therapeutics: Commercial-stage gene therapy company with approved and pipeline programs in Duchenne and limb-girdle muscular dystrophies. Relevant as the type of strategic acquirer the foundation's research could eventually feed into.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat4 records
Key risks6 records
Key highlights7 records
Customer concentration
L-CMD Research Foundation social profiles
Digital presenceL-CMD Research Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
L-CMD Research Foundation leadership team
Management profileNumber of profiles
Profiles1 record
L-CMD Research Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
L-CMD Research Foundation M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about L-CMD Research Foundation
What does L-CMD Research Foundation do?
L-CMD Research Foundation is a 501(c)(3) nonprofit that funds and coordinates scientific research into treatments and a cure for LMNA-related congenital muscular dystrophy (L-CMD). It runs community-driven fundraising campaigns, maintains a patient registry via CMDIR, and partners with biopharmaceutical researchers (notably Entos Pharmaceuticals) to advance gene therapy development using the Fusogenix PLV non-viral delivery platform.
Is L-CMD Research Foundation a public or private company?
L-CMD Research Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was L-CMD Research Foundation founded?
L-CMD Research Foundation was founded in 2020.
Where is L-CMD Research Foundation based?
L-CMD Research Foundation is headquartered in Houston, United States, in the North America region.
How does L-CMD Research Foundation make money?
Five revenue lines are on record. Charitable Donations are the primary driver. The others are fundraising Events, stock and Crypto Donations, IRA and DAF Donations and corporate Matching and Sponsorships.
Who are L-CMD Research Foundation's main competitors?
Direct peers on record are Charley's Fund, Parent Project Muscular Dystrophy, CureDuchenne, A Foundation Building Strength, Cure SMA and Coalition to Cure Calpain 3. Entos Pharmaceuticals is listed as an others. SOLID Biosciences is listed as an emerging player. Broad incumbents are Muscular Dystrophy Association (MDA) and Sarepta Therapeutics.
Does L-CMD Research Foundation have an API?
No public API is recorded for L-CMD Research Foundation.
What industry is L-CMD Research Foundation in?
L-CMD Research Foundation's product category is Nonprofit Medical Research Foundation. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 541714 and its SIC code is 8000.