Foundation for Prader-Willi Research Canada

What Foundation for Prader-Willi Research Canada does

Foundation for Prader-Willi Research Canada (FPWR Canada) is a registered Canadian charity (#855717385RR0001) founded in 2006 by parents of children with Prader-Willi Syndrome. The organization's mission is to eliminate the challenges of PWS — a complex genetic disorder characterized by hyperphagia, growth hormone deficiency, behavioural issues, and autism-spectrum comorbidities — through advancement of research and therapeutic development. FPWR Canada operates a research grant program that has funded over $2 million across 34 projects at universities worldwide since 2003, covering genetics, epigenome editing, hypothalamic gene therapy, drug repurposing, behavioural interventions, and emerging AI/LLM applications for PWS. The foundation supports the Global PWS Registry, including French translation, to enable cross-border data collaboration.

FPWR Canada runs a community-led program portfolio anchored by the annual PWS National Conference (now co-hosted with OPWSA in 2026), the Western Canada PWS Family & Research Conference, the national One Small Step grassroots walk initiative in cities across Canada, the A Night of Laughs comedy fundraiser, and merchandise and sweepstakes campaigns (Toronto Maple Leafs, Toronto Raptors, WestJet Hope Takes Flight). It also produces support services for newly diagnosed families, including a New Parents Package with service maps across Canadian provinces, IPWSO-curated Famcare Guides, community stories, and a monthly giving program. Distribution is purely digital-plus-events: the fpwr.ca website, CanadaHelps, Rafflebox, Zeffy, Facebook, Instagram, and email newsletters.

Revenue mechanics rest on four streams: individual and monthly donations, tiered corporate sponsorship (Live Life FULL Champion, Research Ambassador, Research Supporter, Earth Shaker, Ground Breaker, Friend of the Cause), merchandise sales (Live Life FULL Necklace and Wood Ornament), and event-based sweepstakes/raffles. The foundation is governed by a 9-member board of directors composed of parents of people with PWS and community professionals, each contractually committed to raising $10,000 annually. FPWR Canada operates in close coordination with its US sister organization, Foundation for Prader-Willi Research (FPWR.org), sharing grant processes and research infrastructure while maintaining a distinct Canadian charitable identity.

Name

Foundation for Prader-Willi Research Canada

Legal name

Foundation for Prader-Willi Research Canada

Website

https://fpwr.ca

Company type

Private

Founded year

2006

Operating status

Operating

Short description

FPWR Canada is a registered Canadian charity founded in 2006 that funds Prader-Willi Syndrome research worldwide and supports PWS families through conferences, a national walk program, educational resources, and community programs across Canada.

Ownership category

akta.pro rank

Product category

Rare Disease Research Foundation

NAICS

Grantmaking Foundations (813211), Voluntary Health Organizations (813212)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Corporate Foundations & CSR Grantmaking (BPAGAKAC)

Keywords

• Rare disease research funding
• Genetic disorder nonprofit
• Patient community support
• Research grant programs
• Charitable health advocacy

Headquarters

HQ city

Richmond Hill

HQ country

Canada

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Others, Personnel, Operations, Marketing or Sales

Revenue model

1. Donations and Fundraising: Individual donations through one-time and monthly giving programs, with donors able to contribute via the website, CanadaHelps platform, and event participation.
2. Corporate Sponsorship: Corporate sponsorship packages at multiple tiers (Live Life FULL Champion, Research Ambassador, Research Supporter, Earth Shaker, Ground Breaker, Friend of the Cause) with associated benefits including logo placement, speaking opportunities, and social media recognition.
3. Merchandise Sales: Sale of branded merchandise including Live Life FULL Necklace ($50 CAD Canada / $60 USA) and Live Life FULL Wood Ornament ($25 CAD Canada / $30 USA), with proceeds supporting PWS research.
4. Sweepstakes and Raffles: Sweepstakes events including Toronto Maple Leafs tickets, Toronto Raptors tickets, and WestJet Hope Takes Flight (flights to any WestJet destination) to raise funds for research.

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels7 records

Core offering

FPWR Canada is a registered Canadian charity that funds Prader-Willi Syndrome research grants at universities worldwide and delivers community support programs for affected families. Its portfolio includes a collaborative grant-making program with sister organization FPWR.org, the Global PWS Registry, annual and regional PWS conferences, the One Small Step national walk initiative, sweepstakes fundraisers, corporate sponsorship tiers, and a New Parents Package for newly diagnosed families. The foundation also operates a merchandise storefront (Shop to Support) whose proceeds fund PWS research and family support.

Product overview

FPWR Canada is a registered Canadian charity founded in 2006 by parents of children with Prader-Willi Syndrome, focused on eliminating the challenges of PWS through research and therapeutic development. The organization operates as a research funding foundation with a portfolio of programs including: research grant funding awarded to scientists at universities worldwide (covering genetics, therapies, behavioral interventions, and drug development); the annual PWS National Conference with tracks for families, professionals, and individuals with PWS; regional conferences in Western Canada; the national One Small Step walk fundraising initiative; sweepstakes fundraisers (Toronto Maple Leafs, Raptors, WestJet); and community support services including a New Parents Package, newsletters, and community stories. The organization has funded over $2 million in research across 34 projects since 2003.

Differentiator

Problem solved

Functional benefit

Products and services

• Research Grant Program A professionally managed grant program, operated jointly with sister organization FPWR.org, that funds Prader-Willi Syndrome research at universities worldwide. Grants awarded by FPWR Canada have supported projects on AI for nutritional phase determination, epigenome editing, drug repurposing, hypothalamic gene therapy, mitochondria, autism in PWS-UPD, microglia, hormone pathways, behavioural therapies, and more.
• Global PWS Registry A patient registry supporting Prader-Willi Syndrome research with French-language translation, enabling data collection and collaboration across the global research community.
• 2026 PWS National Conference Annual national conference co-hosted by FPWR Canada and the Ontario Prader-Willi Syndrome Association at The Kingbridge Centre in King City, Ontario, featuring three paid tracks: Professional Providers Day for educators and professionals, Family Conference for parents and guardians, and Friends & Fun Club for individuals with PWS and their siblings.
• Western Canada PWS Family & Research Conference Regional conference for families and researchers in Western Canada providing education, networking, and community connection specific to PWS.
• A Night of Laughs for PWS Comedy event fundraiser supporting PWS research, sold via ticket purchases that benefit the organization.
• One Small Step Walk Program National grassroots fundraising walk initiative bringing communities together across Canada to raise awareness and funds for PWS research. Walk events are organized in cities including North Vancouver, Carleton Place, Toronto, Calgary, and Happy Valley Goose Bay, with donations processed through the CanadaHelps platform.
• Toronto Maple Leafs Sweepstakes Ticket sweepstakes for Toronto Maple Leafs games supporting PWS research funding, sold through Rafflebox ticketing.
• Toronto Raptors Sweepstakes Ticket sweepstakes for Toronto Raptors games supporting PWS research funding, sold through Rafflebox ticketing.
• WestJet Hope Takes Flight Sweepstakes Travel sweepstakes offering flights to any WestJet destination to raise funds for PWS research, sold through Rafflebox ticketing.
• New Parents Package Resource package for families with a new PWS diagnosis that includes interactive service maps, supports, and professional contacts across Canada, drawing on IPWSO Famcare Guides and FPWR Canada's Canadian services map.
• Shop to Support Merchandise Store Branded merchandise store selling items including the Live Life FULL Sterling Silver Necklace (18-inch chain with 2-inch extender, 14.35mm pendant engraved on both sides) and the Live Life FULL Wood Ornament, with proceeds supporting PWS research.
• Corporate Sponsorship Packages Tiered sponsorship opportunities for corporate partners, structured across six tiers (Live Life FULL Champion, Research Ambassador, Research Supporter, Research Earth Shaker, Research Ground Breaker, and Friend of the Cause), with benefits including logo placement on FPWR Canada materials, speaking opportunities, and social media recognition.

Quantifiable outcome

• Funded 34 Prader-Willi Syndrome research projects since 2003
• +2 more outcomes

Named customers8 records

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

Nine partnerships are on record, tiered core, major and minor.

• Ontario Prader-Willi Syndrome Association (OPWSA)coreStrategic or Co-development Partner · 18 September 2026Co-hosting the 2026 PWS National Conference with FPWR Canada. OPWSA is a community of families, caregivers, medical researchers, and educators who live with and support those with PWS.
• Latham CentersmajorStrategic or Co-development Partner · 18 September 2026Team from Latham Centers returning to 2026 PWS National Conference Professional Providers Day to build on learning from inaugural event. Latham Centers has worked since 1970 with young people and adults facing difficult challenges.
• Foundation for Prader-Willi Research (FPWR US)coreStrategic or Co-development PartnerSister organization established in 2003 by parents of children with PWS. FPWR Canada works closely with FPWR.org through a professionally managed grant process. FPWR Canada redirects to US site for some research project details. US organization composed of parents, family members, researchers, and others addressing PWS issues including childhood obesity and autism spectrum disorders.
• International Prader-Willi Syndrome Organization (IPWSO)majorStrategic or Co-development PartnerIPWSO's mission is to raise quality of life for all people with PWS and their families. Financed by subscriptions from member associations, donations, and grants. Non-profit organization run by volunteers. FPWR Canada uses IPWSO's Famcare Guides for families.
• Kingbridge CentreminorOthersVenue for 2026 PWS National Conference at 12750 Jane Street, King City, Ontario. Provides overnight accommodation at $300+HST single occupancy or $347+HST double occupancy including breakfast. Block of rooms available until August 19th.
• Canadian Organization for Rare Disorders (CORD)minorStrategic or Co-development PartnerCanada's national network for organizations representing those with rare disorders. CORD works with governments, researchers, clinicians, and industry to promote research, diagnosis, treatment, and services for rare disorders.
• Frank H HoriminorGTM or Marketing PartnerListed sponsor/logo on Partners & Supporters page at Research Supporter or higher tier.
• AcadiaminorGTM or Marketing PartnerListed sponsor/logo on Partners & Supporters page at Research Supporter or higher tier.
• Provincial ExcavatingminorGTM or Marketing PartnerListed sponsor/logo on Partners & Supporters page at Research Supporter or higher tier.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Market position

Competitive moat4 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/fpwrCanada
• Instagraminstagram.com/fpwrCanada

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Foundation for Prader-Willi Research Canada