irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $27KCOMMUNITY & FAMILY SUPPORT - KIF1A.ORG'S COMMUNITY AND FAMILY SUPPORT PROGRAM EMPOWERS INDIVIDUALS AFFECTED BY KIF1A ASSOCIATED NEUROLOGICAL DISORDER (KAND) THROUGH DIRECT SUPPORT, RESOURCE DEVELOPMENT, AND FAMILY-CENTERED INITIATIVES. THIS PROGRAM PROVIDES A VITAL SUPPORT NETWORK FOR PATIENTS, CAREGIVERS, AND ADVOCATES NAVIGATING THE CHALLENGES OF A RARE NEURODEGENERATIVE DISEASE. THROUGH VIRTUAL MEETUPS, EDUCATIONAL WEBINARS, PERSONALIZED FAMILY OUTREACH, AND AN ONLINE COMMUNITY PLATFORM, KIF1A.ORG FOSTERS MEANINGFUL CONNECTIONS AMONG FAMILIES AROUND THE WORLD. THE PROGRAM ALSO PROVIDES GUIDANCE ON CLINICAL CARE, ACCESS TO RESEARCH OPPORTUNITIES, AND EMOTIONAL SUPPORT RESOURCES. BY AMPLIFYING THE VOICES OF PATIENTS AND CAREGIVERS, THE COMMUNITY AND FAMILY SUPPORT PROGRAM HELPS BUILD RESILIENCE, REDUCE ISOLATION, AND ENSURE THAT EVERY KAND FAMILY IS EQUIPPED WITH THE TOOLS AND INFORMATION NEEDED TO FACE THE COMPLEX REALITIES OF THIS ULTRA-RARE DISORDER.
- #2 $19KMEDICAL RESEARCH AND DEVELOPMENT - KIF1A.ORG'S MEDICAL RESEARCH AND DEVELOPMENT PROGRAM ACCELERATES DISCOVERY AND THERAPEUTIC DEVELOPMENT FOR KIF1A ASSOCIATED NEUROLOGICAL DISORDER (KAND) BY DRIVING SCIENTIFIC COLLABORATION AND PATIENT-CENTERED RESEARCH. LED BY OUR CHIEF SCIENCE OFFICER, THIS PROGRAM FACILITATES COORDINATION AMONG RESEARCHERS, CLINICIANS, AND INSTITUTIONS AROUND THE WORLD TO ALIGN EFFORTS, SHARE DATA AND RESOURCES, AND ADVANCE UNDERSTANDING OF KIF1A-RELATED SYMPTOMS. THROUGH STRATEGIC PARTNERSHIPS, RESEARCH GRANTS, AND CONVENING GLOBAL EXPERTS, THE PROGRAM HELPS IDENTIFY AND PRIORITIZE HIGH-IMPACT RESEARCH PROJECTS. IMPORTANTLY, KIF1A.ORG ENSURES THAT THE PATIENT AND CAREGIVER PERSPECTIVE REMAINS CENTRAL IN ALL SCIENTIFIC DISCUSSIONS, FROM BASIC RESEARCH TO CLINICAL TRIAL DESIGN. BY BRIDGING THE GAP BETWEEN FAMILIES AND THE SCIENTIFIC COMMUNITY, THE MEDICAL RESEARCH AND DEVELOPMENT PROGRAM FOSTERS A COLLABORATIVE ECOSYSTEM DEDICATED TO DELIVERING MEANINGFUL OUTCOMES FOR THOSE AFFECTED BY KAND.
named programs · 3 · from sources
What they call their work
Community & Family Support
Provides direct support, resource development, and family-centered initiatives for individuals affected by KAND, including virtual meetups, educational webinars, personalized outreach, and an online community platform to reduce isolation and improve access to care and research opportunities.
International KAND Ambassadors Program
Network of multilingual volunteer ambassadors in multiple countries who provide localized support, translation, physician referrals, and community connections for KAND families in their regions.
Medical Research and Development
Accelerates discovery and therapeutic development for KAND by facilitating scientific collaboration, funding research projects, convening global experts, and ensuring patient perspectives are integrated into research and clinical trial design.
activities · 5 groups
What they do
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Rare Genetic Disease Research and Advocacy 7 activities
- Community and family support for KAND-affected individualsProvides community and family support through virtual meetups, educational webinars, personalized outreach, an online platform, and an international network of multilingual volunteer ambassadors offering translation, physician referrals, and peer connections. Represents over 600 diagnosed families across more than 55 countries.
- Conducting natural history and genotype/phenotype studiesConducts longitudinal natural history studies and detailed genotype/phenotype research to track disease progression, severity, and measurable outcomes in individuals with KAND.
- Developing and operating pre-clinical research platformsDevelops and uses mouse models and iPSC-based drug screening platforms in partnership with The Jackson Laboratory and Coriell Institute, making these tools accessible to academic and biotech members of the KIF1A Research Network.
- Maintaining and providing access to research resourcesMaintains a biobank of tissue and blood samples, a global map of patient locations, and provides access to animal models (e.g., p.L181F and p.P305L mutant mice) and patient-derived or genetically engineered iPSC lines for KAND research through partnerships with Coriell Institute and The Jackson Laboratory.
- Organizing fundraising for KAND researchOrganizes fundraisers to support research initiatives for KIF1A-Associated Neurological Disorder.
- Raising public and regulatory awareness of KANDRaises awareness through annual KIF1A Day on April 28th, produces documentary and video content (e.g., “Hope Starts”) featuring patient stories to highlight unmet needs and resilience, and shares patient journey stories to support advocacy and regulatory engagement.
- Supporting clinical trial readiness and therapeutic developmentEstablishes centers of excellence with clinical trial capabilities, maintains a re-contactable patient registry, engages families in trial design, develops clinical endpoints, and supports formulation decisions through a family advisory board to accelerate therapeutic development for KAND.
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Biomedical Research and Innovation 1 activity
- Advancing KAND research through global coordination and data sharingAdvances medical research by coordinating researchers, clinicians, and institutions globally to align scientific efforts, share data, and prioritize high-impact research projects for KAND.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding clinical and pre-clinical research for KANDFunds clinical research, including a $250,000 commitment in 2026 to the Chung Lab at Boston Children’s Hospital, and supports a robust pre-clinical research program aimed at developing treatments for KIF1A-Associated Neurological Disorder (KAND).
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Patient and Researcher Conferences 1 activity
- Organizing in-person and virtual community eventsHosts annual in-person conferences, such as the 2023 event in New York, and virtual events to connect the KIF1A community, share knowledge, and foster peer support.
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Familial Support for Rare Genetic Conditions 1 activity
- Support for KAND clinical care and research accessSupports clinical care and access to research opportunities by guiding families to specialized clinics, including the KIF1A NEXTGen Clinic and Gia’s Closet at Boston Children’s Hospital, and providing resources for diagnosis and treatment pathways.
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financials · form 990 · fy2024
revenue
Total revenue$295K
Contributions & grants$292K99%
Program service revenue$2K1%
Investment income$00%
Other revenue$0
expenses
Total expenses$149K
Program expenses75%
Admin / overhead21%
Fundraising4%
Salaries & benefits$95K
Grants paid out$3K
Largest expense lineCompensation
balance sheet
Total assets$218K
Cash$218K
Investments$0
Liabilities$0
Net assets$218K
Liquid reserves17.6 mo
2 years on record · 2020–2024 · YoY revenue -60.3%
leadership · form 990 part vii · fy2024
Who runs it
board members · 7
- ANGIE FULLER — CHAIRPERSON, TREASURER
- LUKE ROSEN — BOARD MEMBER
- MARIA BARROS — BOARD MEMBER
- MICHELLE TAO — VICE CHAIRPERSON, SECRETARY
- PATRICK SARMIERE — BOARD MEMBER
- SALLY JACKSON — BOARD MEMBER
- TAMARA AGAJANOV — BOARD MEMBER
relationships · 18
Who they work with
- Boston Children's Hospital Partner — Collaborates on the development of the KIF1A NEXTGen Clinic and Gia’s Closet, and supports clinical research through the Chung Lab.
- Brayden Chittum Partner — Family shares personal journey to support KIF1A awareness and fundraising efforts.
- Chan Zuckerberg Initiative Network — Partner organization featured in shared content related to rare disease research.
- Chief Science Officer Partner — Leadership role leading the Medical Research and Development program
- Chung Lab Partner — Longstanding research partner at Boston Children’s Hospital receiving funding from KIF1A.ORG for KIF1A clinical research.
- Chung Lab Partner — Partnership to conduct natural history studies and maintain a biobank of tissue and blood samples.
- Coriell Institute Partner — Partnership to produce induced pluripotent stem cells (iPSCs) for research on KAND.
- Coriell Institute for Medical Research Partner — Collaborates to provide patient-derived KIF1A variant iPSC lines for research.
- KIF1A France Partner — Partners with KIF1A France, a national association co-founded by Audrey Guilmatre, Emeline Goaziou, and Pierre Goaziou, to support French-speaking KAND families.
- KIF1A ITALIA Partner — Collaborates with KIF1A ITALIA, an Italian organization co-founded by Ennio Lamari, to support KAND families in Italy.
- KIF1A Japan Partner — Works with KIF1A Japan, a national organization founded by Nanako Oda, to support Japanese-speaking KAND families and promote research in Japan.
- KIF1A Spain Partner — Collaborates with KIF1A Spain, a national organization co-founded by Alejandro Doval and Maribel Saez, to support KAND families in Spain and Portugal.
- Murdoch Children’s Research Institute Partner — Collaborates with KIF1A.ORG on research initiatives for KIF1A Associated Neurological Disorder.
- Patrick Sarmiere Partner — Longtime research partner who joined the board of directors to advance scientific understanding of KAND.
- Superhero Stories Partner — Features stories of individuals affected by KIF1A Associated Neurological Disorder.
- The Jackson Laboratory Partner — Collaborates on developing mouse models and isogenic lines for studying KAND and testing therapeutics.
- The Jackson Laboratory Partner — Collaborates to provide animal models and genetically engineered iPSC lines for KIF1A research.
- partner organizations Partner — Collaborates with partner organizations to advance research and support for KIF1A Associated Neurological Disorder.
strategies · 4
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Community-Driven Peer Support Networkmethodology: peer-support_networkBy leveraging peer relationships and regional ambassadors, we build resilient, localized support communities that reduce isolation and improve coping, because shared lived experience fosters trust and accessible, culturally relevant support.
- De-Risked Collaborative Therapeutic Developmentmethodology: de-risking_industry_developmentBy providing pre-validated research tools and patient engagement resources to biotech partners, we accelerate drug development, because reducing early-stage uncertainty attracts industry investment and shortens the path to treatments.
- Patient-Centered Research Collaborationmethodology: patient-centered_researchBy centering patient and caregiver perspectives in research and clinical trial design, we accelerate therapeutic development and ensure scientific efforts address real community needs, because lived experience improves research relevance and engagement.
- Story-Based Advocacy and Awarenessmethodology: story-based_advocacyBy sharing personal stories of individuals with KIF1A, we humanize the disorder and inspire public and scientific engagement, because narrative empathy drives support, funding, and motivation toward a cure.