Association for Frontotemporal Degeneration

What Association for Frontotemporal Degeneration does

The Association for Frontotemporal Degeneration (AFTD), legally "The Association for Frontotemporal Degeneration" (EIN 41-2073220), is a U.S.-based tax-exempt nonprofit headquartered at 2700 Horizon Drive, Suite 120, King of Prussia, Pennsylvania. AFTD is the leading American nonprofit dedicated solely to frontotemporal degeneration (FTD) — the most common form of dementia for people under 60, with an estimated 50,000–60,000 U.S. cases (widely viewed as an underestimate due to an average 3.6-year diagnostic delay and frequent misdiagnosis as Alzheimer's, depression, Parkinson's, or psychiatric conditions). The organization serves four primary constituencies: individuals diagnosed with any FTD subtype (bvFTD, PPA, PPAOS, CBS, PSP, FTD-ALS) and their families/care partners; healthcare professionals (neurologists, geriatricians, speech-language pathologists, genetic counselors, etc.); academic and industry researchers; and donors and advocates.

AFTD's core product set consists of free support services and educational resources, not technology products. These include the AFTD HelpLine (staffed by social workers, available by phone, email, and scheduled call), a national network of FTD-specific support groups delivered both in-person and via Zoom — segmented by diagnosis subtype, language, and care-partner demographics — and Comstock Grants (Respite, Travel, and Quality of Life grants for persons with FTD and care partners). Educational offerings comprise FTD-specific diagnostic checklists for multiple subtypes, translated into Dutch, French, Italian, Polish, and Spanish; the Newly Diagnosed Guide; the "Life After an FTD Diagnosis" booklet; and a portfolio of publications including AFTD Insights, Help & Hope, Partners in FTD Care, FTD Research Spotlight, and FTD Science Digest. Research infrastructure includes the FTD Disorders Registry (ftdregistry.org), co-managed with the Bluefield Project to Cure FTD, which connects patients to clinical trials and natural history studies. AFTD runs the annual Education Conference, CME-credit healthcare webinars, the Walk for FTD community fundraising event series, and an Ambassador and volunteer program.

The business model is donation-driven: AFTD generates revenue through individual and family donations, community fundraising (Walk for FTD), grants from foundations and corporate partners (AviadoBio and Target ALS are named), and likely contributed services from its volunteer network. All core services are provided free of charge to patients, families, healthcare professionals, and researchers. No pricing models, product fees, or subscription revenue exist. Distribution is primarily digital (theaftd.org, social channels across Facebook, Instagram, TikTok, LinkedIn, Threads, Bluesky, and YouTube), supplemented by virtual Zoom programming and a smaller set of in-person support groups and events. The organization is governed by a Board of Directors and advised by a Medical Advisory Council and a Persons With FTD Advisory Council; operational leadership was refreshed in 2025 with the appointment of Rachel Biblow as CEO.

Name

Association for Frontotemporal Degeneration

Legal name

The Association for Frontotemporal Degeneration

Website

https://theaftd.org

Company type

Private

Founded year

2002

Operating status

Operating

Headcount range

11–50 employees

Short description

The Association for Frontotemporal Degeneration (AFTD) is a U.S.-based nonprofit providing free support services, educational resources, and research advocacy for individuals with frontotemporal degeneration, their families and care partners, healthcare professionals, and researchers across the United States.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Disease Support Services

NAICS

Services for the Elderly and Persons with Disabilities (62412), Individual and Family Services (6241)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disability Services & Assistive Solutions (Accessibility, Assistive Tech) (BPAGALAM)

Keywords

• FTD patient advocacy
• Frontotemporal degeneration support
• Dementia caregiver education
• Neurodegenerative disease nonprofit
• FTD clinical research registry

Headquarters

HQ city

King Of Prussia

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: AFTD generates revenue primarily through donations from individuals, families, and supporters affected by FTD. The website features a prominent 'Donate' call-to-action and the organization publishes annual financial and impact reports. No product or service fees are charged to patients or families.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels9 records

Core offering

AFTD is a U.S. nonprofit organization that provides free education, support services, advocacy, and research resources for individuals and families affected by frontotemporal degeneration (FTD). Its core offerings include a social-worker-staffed HelpLine, national in-person and virtual FTD-specific support groups, multi-language diagnostic checklists, the FTD Disorders Registry, Comstock Grants for financial assistance, and educational publications for patients, families, healthcare professionals, and researchers.

Product overview

AFTD is a non-profit organization offering a comprehensive suite of support services and educational resources for individuals and families affected by Frontotemporal Degeneration. The organization provides its services through multiple channels: the AFTD HelpLine staffed by social workers, downloadable Diagnostic Checklists for various FTD subtypes available in multiple languages, the FTD Disorders Registry connecting individuals with research opportunities, Comstock Grants providing financial assistance, and both in-person and virtual Support Groups. Educational offerings include various Publications (AFTD Insights, Help & Hope, Partners in FTD Care, FTD Research Spotlight, FTD Science Digest), webinars, the Newly Diagnosed Guide, and the Life After an FTD Diagnosis booklet. These resources work together to support patients, care partners, healthcare professionals, and researchers throughout the FTD journey.

Differentiator

Problem solved

Functional benefit

Products and services

• AFTD HelpLine A toll-free helpline staffed by social workers that answers FTD questions, provides guidance on managing diagnoses, connects individuals to resources and support, and offers emotional support. Available by phone Monday–Friday 9 a.m.–5 p.m. ET and via email at [email protected].
• FTD Diagnostic Checklists PDF checklists that help identify red flags for FTD subtypes including Behavioral Variant FTD (bvFTD), Primary Progressive Aphasia (PPA), Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), and FTD-ALS. Available in multiple languages including Dutch, French, Italian, Polish, and Spanish.
• FTD Disorders Registry A registry co-managed by AFTD and the Bluefield Project to Cure FTD that connects individuals with FTD research opportunities, provides personalized updates on clinical trials, and enables participants to contribute to research through surveys.
• Comstock Grants Three grant programs providing modest financial assistance: Respite Grants for full-time unpaid care partners to arrange short-term relief, Travel Grants for attending FTD-focused events, and Quality of Life grants to help persons with FTD access goods and services.
• AFTD Support Groups FTD-specific support groups including care partner support groups, persons with FTD groups, bereavement groups, and specialized groups for Adult Children, LGBTQIA+ Care Partners, Male Care Partners, Spanish-Speaking Care Partners, and Young Adults with a parent diagnosed with FTD. Available in-person and via Zoom.
• Newly Diagnosed Guide A comprehensive guide helping individuals and care partners navigate a new FTD diagnosis, including information on understanding FTD, sharing the diagnosis, adjusting to life with FTD, planning for legal/financial issues, research participation, and care team coordination. Available in English and multiple translations.
• Life After an FTD Diagnosis Booklet A detailed PDF booklet providing information for those facing an FTD diagnosis, covering disease overview, sharing the diagnosis, and available resources and support.
• AFTD Publications and Newsletter Suite Multiple recurring publications including AFTD Insights (newsletter), Help & Hope (for families), Partners in FTD Care (for healthcare professionals), FTD Research Spotlight (for researchers), and FTD Science Digest (for community), along with webinars and educational conference sessions.

Quantifiable outcome

• Estimated 50,000–60,000 people in the U.S. have FTD, with experts believing the figure is underestimated due to misdiagnosis
• +2 more outcomes

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and minor.

• Target ALScoreStrategic or Co-development Partner · 1 January 2019AFTD and Target ALS announced a partnership in 2019 to advance understanding of FTD-ALS. The organizations subsequently announced joint grants for research targeting treatments and biomarkers for FTD-ALS, representing a significant co-development investment in a shared disease area.
• AviadoBiominorStrategic or Co-development PartnerAviadoBio provided generous support enabling AFTD to translate its bvFTD and PPA Diagnostic Checklists and Newly Diagnosed Checklist into Dutch, French, Italian, Polish, and Spanish — expanding access to FTD diagnostic resources for non-English-speaking populations.
• CurePSPminorStrategic or Co-development PartnerCurePSP is referenced as an external resource for corticobasal syndrome and progressive supranuclear palsy, with AFTD linking to CurePSP's video for health professionals on diagnosing CBS or PSP. The organizations share overlapping constituencies in the FTD/movement disorder space.
• Brain Donor Project / NeuroBioBankminorStrategic or Co-development PartnerThe Brain Donor Project, affiliated with the NIH NeuroBioBank, helps families complete brain donation paperwork and arrange logistics for FTD and neurodegenerative disease research. AFTD recommends this resource to families considering brain donation.
• Brain Support NetworkminorStrategic or Co-development PartnerBrain Support Network helps families navigate the brain donation process for neurodegenerative diseases including FTD. AFTD references this organization as a resource alongside the Brain Donor Project.
• Bluefield Project to Cure FTDcoreStrategic or Co-development PartnerAFTD co-manages the FTD Disorders Registry (ftdregistry.org) with the Bluefield Project to Cure FTD. The registry is a cornerstone tool connecting FTD patients and families to clinical trials and advancing FTD science, representing a flagship co-development partnership.
• UCSF Memory and Aging CenterminorStrategic or Co-development PartnerUCSF Memory and Aging Center co-facilitates the National UCSF Adult Children Phone Group, a support group for adult children caring for a parent with FTD, providing clinical credibility and expertise to AFTD's support programming.

Scale indicators7 records

Recent moves5 records

Expansion highlights2 records

Direct peers

• CurePSP: Nonprofit focused on Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), and related FTD-spectrum disorders — a near-direct peer to AFTD with overlapping constituency, similar mission, and a documented partnership relationship for clinical and family resources.
• Bluefield Project to Cure FTD: Research-focused nonprofit dedicated to curing FTD; co-manages the FTD Disorders Registry with AFTD. Highly comparable mission focused exclusively on FTD, with a complementary (research-first) rather than competing posture.
• Target ALS: Nonprofit driving breakthroughs for ALS, including the FTD-ALS overlap population. AFTD's 2019 partner for joint FTD-ALS grants — comparable disease-focused research foundation model with intersecting beneficiary populations.
• ALS Association: Larger national nonprofit for ALS, which shares the FTD-ALS disease continuum with AFTD. Comparable disease-advocacy model serving patients, families, researchers, and clinicians, with broader scale and overlapping FTD-ALS beneficiaries.
• Lewy Body Dementia Association: Nonprofit serving individuals and families affected by Lewy Body Dementia — a closely analogous disease-specific dementia advocacy organization with similar support, education, and research-advocacy programming.
• Huntington's Disease Society of America: Disease-specific nonprofit for Huntington's disease — directly comparable model to AFTD given the genetic basis (~40% of FTD cases are familial; ~20% have identified genetic causes), progressive neurodegenerative trajectory, and care partner focus.
• Parkinson's Foundation: National nonprofit for Parkinson's disease, which overlaps with FTD's movement-disorder spectrum (PSP, CBS) and shares under-60 onset patterns. Highly comparable advocacy, research, and care partner support model.
• BrightFocus Foundation: Nonprofit funding research on Alzheimer's, macular degeneration, and glaucoma — directly comparable disease-research-advocacy model with dementia overlap and similar donor base characteristics to AFTD.

Broad incumbents

• Alzheimer's Association: Largest U.S. dementia nonprofit; serves Alzheimer's and related dementias including FTD as part of a broader portfolio. Comparable mission but vastly larger scale and broader scope — the dominant incumbent competing for dementia philanthropic dollars.
• Michael J. Fox Foundation for Parkinson's Research: Largest nonprofit funder of Parkinson's research; provides a benchmark for what a highly successful disease-specific research foundation can achieve in donor cultivation and research pipeline influence. Operates at much larger scale than AFTD.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/user/TheAFTDorg?feature=watch
• Facebookfacebook.com/TheAFTD
• LinkedInlinkedin.com/company/the-association-for-frontotemporal-degeneration
• Instagraminstagram.com/theaftd/?hl=en
• TikToktiktok.com/@theaftd
• Xx.com/AFTDHope

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments1 record

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Frequently asked questions about Association for Frontotemporal Degeneration