What The Speak Foundation (TSF) does

The Speak Foundation (TSF) is a 501(c)(3) nonprofit organization founded in 2008 by Kathryn Bryant Knudson, headquartered in the United States, and recognized as the first patient-led and patient-run organization in the muscular dystrophy space. TSF serves individuals living with limb-girdle muscular dystrophy (LGMD), their caregivers, clinicians, and researchers, addressing an ultra-rare disease with over 30 subtypes and no FDA-approved disease-modifying therapies. Its mission is centered on elevating the patient voice through education, advocacy, and support, with both the founder and Assistant Director (Jessica Evans) living with LGMD themselves.

TSF operates a portfolio of programmatic assets rather than a technology platform. Its core content property is the LGMD News Magazine, the world's first magazine dedicated to LGMD, published quarterly in both physical form (for U.S. subscribers) and digital form (international) with more than 22 issues since 2021. Patient engagement infrastructure includes the LGMD Patient Network registry and the 'Every Voice Speaks' podcast, which has expanded coverage to adjacent muscular dystrophies (FSHD, Myotonic, Becker, DMD). Healthcare access is delivered through the newly launched LGMD Centers of Excellence network, a national system of five inaugural academic medical centers (University of Minnesota, VCU, University of Iowa, UT Health San Antonio, University of Florida) with dedicated care coordinators and a dedicated intake portal. Financial assistance is provided through the HOPE Project (up to $350 for durable medical equipment), Health Equity travel grants, PCA stipends ($3,000 per recipient), and the Whill Power Chair Giveaway.

The organization's business model is donation- and grant-funded rather than revenue-generating. All programs and services are provided free of charge to patients and families, with funding sourced from individual donors, foundations, and corporate grants (most notably Sarepta Therapeutics, which funds the Health Equity Grant). TSF has no paid customer base in the commercial sense and no disclosed revenue. Its go-to-market is community-led, relying on grassroots engagement through the Patient Network, conferences (International LGMD Conference, LGMD Scientific Summit, LGMD Scientific Workshop), webinars (C.A.R.E. Program), advocacy events (LGMD Day on the Hill), and regulatory engagement (EL-PFDD meetings, FDA Listening Sessions). Strategic partners include the GRASP LGMD Consortium (13 institutional members) and a coalition of more than a dozen subtype-specific LGMD advocacy organizations.

Name

The Speak Foundation (TSF)

Legal name

The Speak Foundation

Website

https://thespeakfoundation.com

Company type

Private

Founded year

2008

Operating status

Operating

Headcount range

1–10 employees

Short description

The Speak Foundation is a patient-led 501(c)(3) nonprofit founded in 2008 that supports individuals living with limb-girdle muscular dystrophy (LGMD) through free education, advocacy, healthcare access, and grant programs, including the LGMD News Magazine and a national Centers of Excellence network.

Ownership category

akta.pro rank

Headquarters

HQ city

Columbus

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Charitable Contributions: The Speak Foundation is a 501(c)(3) nonprofit organization that relies on tax-deductible donations from individuals, foundations, and corporate partners to fund its programs including grant programs, conferences, educational workshops, and patient support initiatives.
2. Corporate Grants: TSF receives grant funding from pharmaceutical and biotech companies. Sarepta Therapeutics has provided funding specifically for the Health Equity Grant program, enabling travel grants for LGMD patients to visit approved centers of excellence.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels12 records

Core offering

The Speak Foundation (TSF) is a patient-led 501(c)(3) nonprofit that delivers free education, advocacy, and support programs to individuals and families affected by limb-girdle muscular dystrophy (LGMD). Its portfolio includes the LGMD News Magazine (the world's first LGMD-dedicated publication), the LGMD Patient Network registry, a national LGMD Centers of Excellence network at leading academic medical centers, multiple financial grant programs (HOPE Project, Health Equity Grant, PCA Stipend, Whill Power Chair Giveaway, C.A.R.E. Box), educational webinars, and annual scientific, advocacy, and patient-focused drug development events.

Product overview

The Speak Foundation (TSF) operates as a patient-led nonprofit organization offering a portfolio of patient support, education, advocacy, and healthcare access programs for the limb-girdle muscular dystrophy (LGMD) community. The core offerings include the LGMD News Magazine (the world's first LGMD-specific publication), the LGMD Patient Network registry, and the LGMD Centers of Excellence network providing access to expert care. Additional programs include educational webinars through the C.A.R.E. Program, grant programs (HOPE Project, Health Equity Grant, PCA Stipend, Whill Power Chair Giveaway), advocacy initiatives (LGMD Day on the Hill, EL-PFDD meetings), and annual conferences (International LGMD Conference, LGMD Scientific Summit, LGMD Scientific Workshop). The organization also produces the Every Voice Speaks podcast. TSF was founded in 2008 and is the first patient-run organization for muscular dystrophy.

Differentiator

Problem solved

Functional benefit

Brands

• LGMD News Magazine: The world's first magazine dedicated to limb girdle muscular dystrophy, providing information on research, clinical trials, and treatment options for LGMD patients.
• Every Voice Speaks
• LGMD Centers of Excellence
• HOPE Project
• C.A.R.E. Program

Products and services

• LGMD News Magazine The world's first magazine dedicated to limb-girdle muscular dystrophy, published quarterly with LGMD research, clinical trial information, and subtype-specific resources. Free to U.S. residents (physical mail) and international subscribers (digital).
• LGMD Patient Network A network for individuals living with LGMD or LGMD-type weakness. Members receive a free LGMD News Magazine subscription and email updates on clinical trials, LGMD events, and research for their specific subtype.
• LGMD Centers of Excellence A national network of LGMD Centers of Excellence developed in partnership with leading academic institutions to provide faster access to expert, personalized LGMD care with dedicated LGMD Care Coordinators who guide patients through scheduling, specialist coordination, and next steps.
• Every Voice Speaks Podcast A podcast that unites and empowers the muscular dystrophy community by elevating patient voices and fostering collaboration across LGMD, FSHD, Myotonic, Becker, and DMD through personal stories, expert interviews, and accessible discussions on research and emerging therapies.
• International Limb Girdle Muscular Dystrophy Conference Annual international conference dedicated to finding safe and effective treatments for all forms of LGMD. Brings together patients, families, GRASP LGMD researchers, and biotech companies to advance treatment development and provide accessible information, social support, advocacy, and symptom management.
• LGMD Scientific Summit An annual scientific summit focused on LGMD research and community engagement, featuring expert presentations and announcements such as the Whill Power Chair Giveaway.
• C.A.R.E. Program The C.A.R.E. (Connecting and Reaching Everyone) Program offers educational webinars with pharmaceutical and biotech industry partners and top researchers from GRASP LGMD, providing cutting-edge research and clinical trial information to help individuals with LGMD feel connected and informed.
• HOPE Project A one-time stipend of up to $350 for qualified U.S. applicants with LGMD diagnosis who need financial assistance for durable medical equipment (DME) expenses for mobility including scooters, commodes, and shower chairs.
• Health Equity Grant Travel grants for qualified LGMD patients living in the U.S. to visit approved leading centers of excellence for LGMD. Provides reimbursement of travel expenses to approved centers including UCI Health, University of Florida, University of Iowa, University of Minnesota, UT San Antonio, VCU, and Washington University St. Louis.
• PCA Stipend Program Grants of $3,000 each funding personal care assistance for full-time workers in the U.S. who live with a form of LGMD. The 2025 round provided 10 grants.
• Whill Power Chair Giveaway Giveaway of a Model F WHILL Folding Electric Wheelchair to an individual or family affected by LGMD, announced during the LGMD Scientific Summit.
• C.A.R.E. Box Program Provides newly diagnosed LGMD patients (diagnosed on or after May 1, 2021) with a gift box containing smart technology and supportive items donated by the International Consortium of LGMD Organizations. Endowed for U.S. residents only.
• LGMD Day on the Hill Annual advocacy initiative enabling LGMD patients and families to advocate for the community by connecting with Congressional offices virtually or in-person to educate legislators about LGMD and its impact on patients' lives.
• LGMD Scientific Workshop Annual multi-stakeholder workshop convening clinicians, researchers, drug developers, regulators, patients, and advocates to discuss LGMD characteristics driving drug development programs. The 2024 workshop was held on February 8, 2024 in Rockville, Maryland.

Quantifiable outcome

• Over 22 issues of LGMD News Magazine published since 2021
• +3 more outcomes

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

19 partnerships are on record, tiered core and minor.

• GRASP LGMD ConsortiumcoreStrategic or Co-development Partner · 1 January 2018The Genetic Resolution and Assessments Solving Phenotypes in LGMD consortium was formed in 2018 with the primary mission of developing validated COAs and biomarkers across LGMDs in advance of precision-based therapies. The consortium has 13 members in the United States and Europe. TSF partners with these top researchers who are involved in all major clinical trials in the USA. The Speak Foundation works closely with GRASP researchers as patient advocacy partners, with investigators working closely with patient advocacy groups such as TSF.
• Coalition to Cure Calpain 3coreStrategic or Co-development PartnerMember of the LGMD Coalition that co-hosted the EL-PFDD meeting for six LGMD subtypes. Coalition includes organizations focused on raising awareness or assisting patients living with LGMD and related neuromuscular diseases, and on achieving clinical trial readiness for particular genetic subtypes.
• CureLGMD2i FoundationcoreStrategic or Co-development PartnerMember of the LGMD Coalition focused on LGMD2i subtype. Co-hosted the EL-PFDD meeting and partners on educational webinars including a September 2020 webinar on potential gene repair approaches with LGMD 2i and 2g.
• Kurt+Peter FoundationcoreStrategic or Co-development PartnerMember of the LGMD Coalition focused on LGMD2C/R5 subtype. Co-hosted the EL-PFDD meeting for six LGMD subtypes held September 23, 2022.
• LGMD2D FoundationcoreStrategic or Co-development PartnerMember of the LGMD Coalition focused on LGMD2D/R3 subtype. Co-hosted the EL-PFDD meeting for six LGMD subtypes held September 23, 2022.
• McColl-Lockwood Laboratory for Muscular Dystrophy ResearchcoreStrategic or Co-development PartnerMember of the LGMD Coalition. Co-hosted the EL-PFDD meeting for six LGMD subtypes held September 23, 2022.
• Jain FoundationminorStrategic or Co-development PartnerListed as part of the broader consortium of advocacy organizations that participated in the October 2020 FDA Listening Session for Limb Girdle Muscular Dystrophy. Focused on LGMD2B/R2.
• Team TitinminorStrategic or Co-development PartnerListed as part of the broader consortium of advocacy organizations that participated in the October 2020 FDA Listening Session. Focused on LGMD2J/R10.
• LGMD Awareness FoundationminorStrategic or Co-development PartnerListed as part of the broader consortium of advocacy organizations that participated in the October 2020 FDA Listening Session.
• Beyond Labels and LimitationsminorStrategic or Co-development PartnerListed as part of the broader consortium of advocacy organizations that participated in the October 2020 FDA Listening Session.
• Breathe with MDminorStrategic or Co-development PartnerListed as part of the broader consortium of advocacy organizations that participated in the October 2020 FDA Listening Session.
• Camron's CureminorStrategic or Co-development PartnerListed as part of the broader consortium of advocacy organizations that participated in the October 2020 FDA Listening Session. Focused on LGMD2S/R18.
• LGMD2L FoundationminorStrategic or Co-development PartnerListed as part of the broader consortium of advocacy organizations that participated in the October 2020 FDA Listening Session.
• LGMD1D/D1 DNAB6 FoundationminorStrategic or Co-development PartnerListed as part of the broader consortium of advocacy organizations that participated in the October 2020 FDA Listening Session.
• ML Bio SolutionscoreStrategic or Co-development PartnerML Bio Solutions is advancing the first-ever oral treatment for LGMD2i (BBP-418/Ribitol). TSF hosted a webinar with their Chief Medical Officer Douglas Sproule and Principal Investigator Nicholas Johnson to educate patients on the treatment approach and clinical trial.
• International Consortium of LGMD OrganizationscoreStrategic or Co-development PartnerThis consortium of LGMD organizations donates smart technology and supportive items for the C.A.R.E. Program gift boxes distributed to newly diagnosed LGMD patients in the United States.
• Nationwide Children's HospitalcoreStrategic or Co-development PartnerDr. Lindsay Alfano from Nationwide Children's Hospital presented a webinar on outcome measures for LGMD patients, explaining their purpose and importance for patients, clinicians, and researchers.
• University of MassachusettscoreStrategic or Co-development PartnerDr. Charles Emerson and Dr. Scot Wolfe from UMass presented a webinar on gene editing approaches for LGMD 2i and 2g, showcasing their research on potential gene repair treatments.
• Thorn Run PartnerscoreImplementation/ SI/ Consulting PartnerThorn Run Partners provided the advocacy webinar and resources for the LGMD Day on the Hill initiative, helping equip advocates with tools for requesting virtual Congressional meetings and policy priority information.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for all rare diseases. TSF engages with NORD-style federal policy work through its Day on the Hill, and NORD represents the broader macro-environment in which TSF operates.
• EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit focused on federal legislation and FDA engagement. Operates in the same advocacy ecosystem as TSF's Day on the Hill and EL-PFDD work.
• Muscular Dystrophy Association (MDA): The largest U.S. neuromuscular disease nonprofit, funding research and care for LGMD among many other dystrophies. TSF complements MDA by serving as the disease-specific, patient-led counterpart for the LGMD subset.

Direct peers

• CureLGMD2i Foundation: LGMD2i-specific patient advocacy organization and active TSF coalition partner. Co-hosts educational webinars and shares the patient-led rare disease nonprofit model.
• Jain Foundation: Focused on LGMD2B/R2 dysferlinopathy, the Jain Foundation funds research and patient programs. Operates as a disease-specific counterpart to TSF's broader LGMD coverage.
• FSHD Society: Patient-led nonprofit for facioscapulohumeral muscular dystrophy, a related muscular dystrophy. Uses a comparable patient-advocacy, research-funding, and clinical-trial engagement model.
• Parent Project Muscular Dystrophy (PPMD): Patient-led nonprofit focused on Duchenne muscular dystrophy (DMD). Operates a similar advocacy, research funding, and care-access model and is a structural template for what TSF has built for LGMD.
• LGMD2D Foundation: Subtype-specific (LGMD2D/R3) advocacy partner within TSF's LGMD Coalition. Demonstrates the fragmented subtype-specific foundation landscape TSF coordinates across.
• Coalition to Cure Calpain 3 (C3): LGMD2A/R1-focused advocacy and research nonprofit and TSF Coalition partner. Shares the disease-specific patient-advocacy model and co-hosted the EL-PFDD meeting with TSF.
• Cure Duchenne: Patient-focused Duchenne muscular dystrophy nonprofit funding research and clinical trial advancement. Represents another muscular dystrophy-specific advocacy peer using a similar pharma-engagement and research-funding approach.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@thespeakfoundationnon-prof1460
• LinkedInlinkedin.com/company/the-speak-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Speak Foundation (TSF)