CureLGMD2i
CureLGMD2i Foundation is a 501(c)(3) nonprofit patient advocacy organization that supports individuals and families affected by ultra-rare Limb Girdle Muscular Dystrophy Type 2I/R9 (LGMD2I/R9) through awareness campaigns, research grantmaking, clinical trial navigation, and community events, coordinating a biotech partner ecosystem developing potential therapies.
- Company typePrivate
- Founded2010
- HeadquartersLancaster, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What CureLGMD2i does
CureLGMD2i Foundation is a 501(c)(3) nonprofit patient advocacy organization headquartered in Lancaster, Pennsylvania, founded in 2016 by the Brazzo Family following their daughter Samantha's diagnosis with Limb Girdle Muscular Dystrophy Type 2I/R9 (LGMD2I/R9), an ultra-rare progressive form of muscular dystrophy. The foundation's mission is patient advocacy, disease awareness, and funding scientific research and drug development toward a cure. Its core "products" are programs rather than technology: a research grant program that has disbursed over $1,500,000 to LGMD2I/R9-focused science; patient resources covering genetic testing access, clinical trial navigation via a myTomorrows partnership, and registration into the Global FKRP Registry and Congenital Muscular Dystrophy International Registry (CMDIR); annual Connecting for a Cure fundraising events; LGMD Awareness Day activations on September 30; patient and family conferences including sponsorship of the Wellstone Dystroglycanopathies conference; and educational content ranging from an Impact Deck for donors to documentaries such as the 2025 15th Anniversary piece and 2026 'Tame the Dark'.
The foundation does not develop proprietary technology. Its business model is donations-based and grants-based as a registered nonprofit: revenue comes from tax-deductible individual and family contributions processed through Network for Good, fundraising events, and the Candid Seal of Transparency (Gold, 2024), NORD membership, and Global Advocacy Alliance affiliation support donor trust. It coordinates a partner ecosystem of biotech sponsors developing therapies for LGMD2I/R9, including BridgeBio (BBP-418, NDA submitted April 2026), AskBio (AB-1003 gene therapy), Atamyo Therapeutics (ATA-100 gene therapy, FDA IND cleared September 2023, US Rare Pediatric Disease Designation April 2025), and Cure Rare Disease (CRD gene therapy funded by a $7.4M CIRM grant awarded December 2025). It also partners with genetic testing providers Revvity (Lantern Project), Invitae, and the NIH-funded Rare Genomes Project to reduce diagnostic barriers.
The organization operates on a community-led go-to-market motion anchored by social media (Facebook, Instagram, LinkedIn), its website, e-newsletter, annual conferences, and documentary content, with operating geographies spanning the US and Canada. It is governed by an Executive Board led by Co-Founder, President, and CEO Kelly Brazzo, supported by a Scientific Director (Dr. Jean Pierre Laurent), Medical Director (Dr. Katherine Mathews), and additional Advisory Board members in marketing, web design, and community roles. Revenue and headcount are not disclosed; based on the absence of any products or services for sale, the volunteer-led board structure, and the cumulative $1.5M grant disbursements since 2016, annual revenue is most likely under $1M.
CureLGMD2i firmographics
Firmographics- Name
- CureLGMD2i
- Legal name
- CureLGMD2i Foundation
- Website
- https://curelgmd2i.com
- Company type
- Private
- Founded year
- 2010
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- CureLGMD2i Foundation is a 501(c)(3) nonprofit patient advocacy organization that supports individuals and families affected by ultra-rare Limb Girdle Muscular Dystrophy Type 2I/R9 (LGMD2I/R9) through awareness campaigns, research grantmaking, clinical trial navigation, and community events, coordinating a biotech partner ecosystem developing potential therapies.
- Ownership category
- akta.pro rank
CureLGMD2i industry classification
Industry- Product category
- Patient Advocacy Services
- NAICS
- Voluntary Health Organizations (813212), Grantmaking Foundations (813211)
- SIC
- Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Research & Science Grantmaking Foundations (BPAGAKAI)
- akta.pro secondary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
Keywords
Where CureLGMD2i is headquartered
LocationHeadquarters
- HQ city
- Lancaster
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
CureLGMD2i business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Grants and Research Funding, Personnel, Marketing or Sales, Operations
Revenue model
- Donations and Grants: CureLGMD2i Foundation operates as a 501(c)(3) nonprofit organization funded through tax-deductible donations from individuals, families, and supporters. The foundation has provided over $1,500,000 to research, advocacy, and awareness programs focused on LGMD2I/R9. Revenue is used to support scientific research, advocacy, and awareness initiatives.
Go-to-market motion1 record
Distribution channels4 records
Marketing channels6 records
CureLGMD2i product offering
Product offeringCore offering
CureLGMD2i Foundation is a 501(c)(3) nonprofit patient advocacy organization dedicated to Limb Girdle Muscular Dystrophy Type 2I/R9 (LGMD2I/R9). It raises awareness, provides patient and family support resources, funds scientific research through grants (over $1,500,000 disbursed to date), facilitates access to clinical trials via partnership with myTomorrows, and connects patients with genetic testing resources. The foundation also produces educational documentaries, hosts annual fundraising events (Connecting for a Cure), and advocates with regulatory bodies like the FDA on behalf of the LGMD2I/R9 community.
Product overview
CureLGMD2i Foundation is a 501(c)(3) nonprofit patient advocacy organization founded by the Brazzo Family to support individuals affected by Limb Girdle Muscular Dystrophy Type 2I/R9 (LGMD2I/R9). The organization provides a portfolio of services including research funding through grants (over $1,500,000 provided to date), patient resources including genetic testing information and clinical trial connections, annual fundraising events (Connecting for a Cure), educational materials and documentaries, and a grant program for researchers. The foundation works with partners including myTomorrows for clinical trial support and maintains registries for patient registration. CureLGMD2i is not a technology product company but a charitable organization focused on advocacy, awareness, and scientific research support.
Differentiator
Problem solved
Functional benefit
Quantifiable outcome
- Over $1,500,000 provided to research, advocacy, and awareness programs
Companies that use CureLGMD2i
Customer profileNamed customers1 record
Segments2 records
Ideal customer profiles2 records
CureLGMD2i technology and API
TechnologyAPI detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
CureLGMD2i partnerships and signals
Strategic signalPartnerships
13 partnerships are on record, tiered core and minor.
- myTomorrowscoreCureLGMD2i Foundation partners with myTomorrows to support people living with limb girdle muscular dystrophy in their journey to find clinical trial options and next steps. The partnership provides patients with access to trial exploration tools and guidance.
- LGMD2i Research FundcoreCollaboration with LGMD2i Research Fund to work together in supporting research for the dystroglycanopathies. The partnership aims to combine efforts and resources to fight LGMD2I/R9 together.
- Wellstone Muscular Dystrophy Specialized Research CentercoreCureLGMD2i sponsors the Wellstone Dystroglycanopathies Patient & Family Conference. The foundation is proud to support this event that is 'home' to the LGMD2I/R9 family. The conference provides opportunities to participate in Natural History Studies and learn about research and trial updates.
- Global FKRP RegistrycorePatient registry for FKRP-related disorders. CureLGMD2i encourages all diagnosed patients to register to help expedite successful treatment research.
- Congenital Muscular Dystrophy International Registry (CMDIR)coreInternational patient registry for congenital muscular dystrophy. CureLGMD2i recommends patients register with CMDIR along with Global FKRP Registry.
- Revvity (The Lantern Project)minorGenetic testing partnership through The Lantern Project, offering information about genetic testing for suspected LGMD2I/R9 patients.
- InvitaeminorGenetic testing partnership providing information about genetic testing options for LGMD2I/R9 diagnosis.
- Rare Genomes ProjectminorPartnership with NIH-funded Rare Genomes Project offering LGMD genetic testing information through the Rare Genomes Project.
- BridgeBio PharmacoreBridgeBio is developing BBP-418, a potential treatment for LGMD2I/R9. CureLGMD2i supports and advocates for BridgeBio's clinical trials. In April 2026, BridgeBio submitted NDA to FDA for BBP-418, which could become the first approved treatment for LGMD2I/R9.
- AskBiocoreAskBio is conducting gene therapy clinical trials (AB-1003) for LGMD2I/R9. CureLGMD2i supports and shares information about AskBio's trials. In March 2025, AskBio advanced their trial with dosing of first participant in second cohort.
- Atamyo TherapeuticscoreAtamyo is developing ATA-100 gene therapy for LGMD2I/R9. FDA cleared their IND in September 2023. In April 2025, Atamyo completed dose-finding study and obtained US Rare Pediatric Disease Designation for ATA-100.
- Cure Rare DiseasecoreCure Rare Disease received a $7.4 million CIRM grant in December 2025 to advance gene therapy for LGMD2I/R9. CureLGMD2i Foundation supports and advocates for this research.
- ML Bio SolutionsminorML Bio Solutions sponsored the Connecting for a Cure Documentary. Partnership for awareness and fundraising content.
Scale indicators2 records
Recent moves6 records
Expansion highlights5 records
CureLGMD2i competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders: Umbrella US rare disease advocacy organization of which CureLGMD2i is a member. Comparable in advocacy mission but operates as a broad incumbent serving all rare diseases rather than a single subtype.
- EveryLife Foundation for Rare Diseases: US rare disease policy and advocacy nonprofit focused on legislative and regulatory issues affecting rare disease communities. Comparable in advocacy orientation but policy-focused and broad-spectrum rather than disease-specific.
- Muscular Dystrophy Association: Largest US muscular dystrophy patient advocacy and research funding organization covering multiple dystrophies including LGMD. Comparable in mission (research funding, advocacy, patient services) but operates as a broad incumbent across many disease subtypes rather than specializing in a single rare form like CureLGMD2i.
Direct peers
- Coalition to Cure Calpain 3: Patient-led foundation focused on LGMD2A/R1 calpainopathy. Direct peer in mission (LGMD-specific research funding, patient advocacy, awareness) and scale, serving as a relevant comparison for an LGMD subtype-focused advocacy nonprofit.
- Jain Foundation: Nonprofit foundation specifically focused on LGMD2B/R2 dysferlinopathy, with a comparable model of research funding, patient registries, and biotech partnership facilitation. Closest peer in form and LGMD-specific focus.
- LGMD2i Research Fund: Nonprofit research fund explicitly dedicated to LGMD2I/R9 and dystroglycanopathies, with which CureLGMD2i maintains a core strategic partnership. Direct overlap on disease focus, research funding, and patient advocacy; effectively a co-peer in the same niche.
- Parent Project Muscular Dystrophy: Disease-specific patient advocacy nonprofit focused on Duchenne muscular dystrophy. Closest direct peer to CureLGMD2i in mission (research funding, clinical trial access, family support) and operating model, but at significantly larger scale and on a different muscular dystrophy subtype.
- Cure SMA: Spinal muscular atrophy patient advocacy nonprofit that drove substantial research funding and clinical trial recruitment for SMA. Highly comparable operating model (rare disease, family-founded, advocacy + research funding + biotech partnership) and a strong peer for benchmarking CureLGMD2i's potential trajectory.
- Friedreich's Ataxia Research Alliance: Disease-specific rare disease advocacy and research nonprofit for Friedreich's ataxia with a similar playbook of research funding, patient registries, clinical trial partnerships, and biotech engagement. Comparable operating model and benchmark for ultra-rare disease foundation trajectory.
- Cure Rare Disease: Nonprofit developing gene therapies for ultra-rare diseases including LGMD2I/R9 (recently awarded a $7.4M CIRM grant for an LGMD2I/R9 program). Direct overlap with CureLGMD2i's therapeutic mission and partner organization, but Cure Rare Disease is also an active drug developer rather than purely an advocacy funder.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights7 records
Customer concentration
CureLGMD2i social profiles
Digital presenceCureLGMD2i financial estimates
Financial estimateRevenue estimate
Valuation estimate
CureLGMD2i leadership team
Management profileNumber of profiles
Profiles10 records
CureLGMD2i funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
CureLGMD2i 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 CureLGMD2i
What does CureLGMD2i do?
CureLGMD2i Foundation is a 501(c)(3) nonprofit patient advocacy organization dedicated to Limb Girdle Muscular Dystrophy Type 2I/R9 (LGMD2I/R9). It raises awareness, provides patient and family support resources, funds scientific research through grants (over $1,500,000 disbursed to date), facilitates access to clinical trials via partnership with myTomorrows, and connects patients with genetic testing resources. The foundation also produces educational documentaries, hosts annual fundraising events (Connecting for a Cure), and advocates with regulatory bodies like the FDA on behalf of the LGMD2I/R9 community.
Is CureLGMD2i a public or private company?
CureLGMD2i is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was CureLGMD2i founded?
CureLGMD2i was founded in 2010. It employs 1 to 10 people.
Where is CureLGMD2i based?
CureLGMD2i is headquartered in Lancaster, United States, in the North America region.
How does CureLGMD2i make money?
One revenue line is on record: donations and Grants.
Who are CureLGMD2i's main competitors?
Broad incumbents on record are National Organization for Rare Disorders, EveryLife Foundation for Rare Diseases and Muscular Dystrophy Association. Direct peers are Coalition to Cure Calpain 3, Jain Foundation, LGMD2i Research Fund, Parent Project Muscular Dystrophy, Cure SMA, Friedreich's Ataxia Research Alliance and Cure Rare Disease.
Does CureLGMD2i have an API?
No public API is recorded for CureLGMD2i.
What industry is CureLGMD2i in?
CureLGMD2i's product category is Patient Advocacy Services. Its primary akta.pro industry code is BPAGAKAI, Research & Science Grantmaking Foundations, with a secondary code of BPAGACAM, Rare Disease & Special Needs Support Organizations. Its NAICS code is 813212 and its SIC code is 8300.