Spotlight YOPD (Registered Charity UK)

What Spotlight YOPD (Registered Charity UK) does

Spotlight YOPD is a UK-registered charity (Charity Number 1165177) founded in January 2016 by Gaynor Edwards, who was diagnosed with Parkinson's in 2012 and was dissatisfied with the absence of age-appropriate support for younger patients. The charity is patient-led and focused exclusively on Young Onset Parkinson's Disease (YOPD) — Parkinson's diagnosed in individuals under the age of 50 — a segment that mainstream Parkinson's services are not structured to serve. Its service portfolio comprises an online Facebook support group hosting expert-led Zoom drop-ins, a podcast series, the "YOUR voice" personal-storytelling platform, a "Wall of Fame" portrait gallery, educational articles for patients, caregivers, and clinicians, and the Parky Charter advocacy document codifying five rights for YOPD patients worldwide. All services are provided free of charge and distributed digitally.

The charity operates entirely on donations and fundraising income — there is no fee-based pricing model and no revenue from services. Its go-to-market is community-led: growth is driven by awareness campaigns, patient referrals, organic social media, content (podcast, articles, newsletters), and partnerships with Parkinson's UK and the Neurological Alliance. Distribution is global in reach via website, Facebook groups, podcast, and the Patron Viewpoints email newsletter, but its primary operating geography is the United Kingdom; the charity is headquartered in Staveley, England. There is no proprietary technology platform — the technology stack is conventional website and social media infrastructure. Headcount is 1–10 employees.

Governance is provided by a Board of Trustees. Current leadership comprises Samantha Cole (CEO — a Consultant Clinical Health Psychologist in the NHS who lives with the condition), Dawn Harding (Chair since 1 May 2025, after a six-year tenure by her predecessor), and Gaynor Edwards as patron. The organisation celebrated its 10th anniversary in January 2026 and does not pursue a commercial growth strategy; its success metrics are awareness, community engagement, advocacy reach, and donor support.

Name

Spotlight YOPD (Registered Charity UK)

Legal name

Spotlight YOPD

Website

https://spotlightyopd.org

Company type

Private

Founded year

2016

Operating status

Operating

Headcount range

1–10 employees

Short description

UK-registered charity (No. 1165177) founded in 2016 supporting people diagnosed with Young Onset Parkinson's Disease (under 50), their caregivers, and clinicians through peer support, the Parky Charter, a podcast, and educational resources.

Ownership category

akta.pro rank

Headquarters

HQ city

Staveley, England

HQ country

United Kingdom

HQ region

Europe

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Fundraising: As a registered UK charity (Number 1165177), Spotlight YOPD operates primarily through donations from individuals and fundraising activities. The charity accepts donations through its website and runs fundraising campaigns, particularly around its anniversary milestones.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels9 records

Core offering

Spotlight YOPD is a UK-registered charity that delivers free peer support, educational content, and advocacy services to individuals diagnosed with Young Onset Parkinson's Disease (diagnosed at or before age 50). Its core services include an online Facebook-based support group with expert Zoom drop-ins, a regular podcast series, a monthly email newsletter, the Parky Charter patient rights document, the Wall of Fame photo gallery, and the YOUR voice storytelling platform. All services are provided free to end users and funded through donations and fundraising.

Product overview

Spotlight YOPD is a UK-registered charity focused on raising awareness and providing support for people with Young Onset Parkinson's Disease (diagnosed before age 50). The organization offers a patient-led support ecosystem comprising: a podcast for community storytelling and awareness; an online Facebook-based support group with expert Zoom meetings; The Parky Charter documenting patient rights; a Wall of Fame photo gallery; the YOUR voice story-sharing platform; and educational articles/resources for patients, caregivers, and clinicians. These services work together to create a community-focused resource hub addressing the unique challenges faced by younger people with Parkinson's.

Differentiator

Problem solved

Functional benefit

Products and services

• Spotlight YOPD Podcast Regular audio podcast series featuring guest interviews, personal stories, and hive-mind discussions with the YOPD community; designed for individuals living with Young Onset Parkinson's Disease, their caregivers, and clinicians seeking insight into the patient experience.
• Online Support Group Facebook-based online community providing a sanctuary for individuals living with YOPD to connect, share knowledge, and build supportive relationships; features regular Zoom drop-in meetings with subject-matter experts; delivered free of charge.
• The Parky Charter An advocacy document outlining five rights for individuals living with YOPD worldwide, developed in collaboration with Parkinson's UK; serves as a guiding framework for the community to unite, inspire change, and advocate for better care and support.
• Patron Viewpoints Newsletter Monthly email newsletter providing updates on YOPD research, news, and inspiring stories from the community; delivered free to subscribers.
• YOUR Voice Storytelling Platform Storytelling platform featuring personal narratives from individuals living with YOPD, sharing diagnosis journeys, coping strategies, and lived experiences of the condition; published on the Spotlight YOPD website.
• Wall of Fame Photo gallery where YOPD patients can add their portrait and personal story to demonstrate that people can live well with YOPD; serves as an awareness and visibility initiative for the community.
• Articles and Educational Content Library Educational articles covering understanding of YOPD, information for newly diagnosed patients, and resources for GPs and clinicians; published on the Spotlight YOPD website.

Quantifiable outcome

• 10 years of service to the YOPD community (2016-2026)

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Two partnerships are on record, tiered core and moderate.

• Parkinson's UKcoreStrategic or Co-development PartnerSpotlight YOPD collaborates with Parkinson's UK on the Parky Charter initiative, which outlines five rights for people living with YOPD. The charity directs supporters to sign the Parky Charter through Parkinson's UK platform, indicating a collaborative advocacy partnership.
• Neurological AlliancemoderateStrategic or Co-development PartnerBarrie Smith, a Spotlight YOPD community member, represents the organization in Neurological Alliance campaigning and TV interviews, indicating advocacy partnership.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Davis Phinney Foundation: US-based Parkinson's nonprofit explicitly focused on helping people with Parkinson's live well today, with substantial Young Onset programming, educational content, and community events that closely mirror Spotlight YOPD's patient-led support model.
• Brian Grant Foundation: Founded by former NBA player Brian Grant after his YOPD diagnosis, this foundation provides education, tools, and inspiration specifically for people living with Young Onset Parkinson's — the closest international peer to Spotlight YOPD's mission.
• PMD Alliance (Parkinson & Movement Disorder Alliance): US-based nonprofit providing education, connection, and support programmes for people living with Parkinson's and movement disorders, with specific resources and events targeted at the Young Onset community.
• Shake It Off Foundation: A YOPD-specific nonprofit offering community, education, and financial assistance to younger people with Parkinson's; comparable niche focus and patient-led ethos, though smaller in scale.

Broad incumbents

• Parkinson's UK: The UK's leading Parkinson's charity, serving all age groups. Spotlight YOPD collaborates with Parkinson's UK on the Parky Charter and refers supporters to its platform, making it the dominant incumbent with overlapping but broader remit.
• The Michael J. Fox Foundation: The largest global funder of Parkinson's research, with growing patient-education and community resources including YOPD-specific content. A scale incumbent comparable in mission area though focused primarily on research rather than direct community support.
• Cure Parkinson's: UK-registered research charity funding curative research into Parkinson's, sharing the same UK disease-category context and donor pool as Spotlight YOPD but with a research rather than community-support orientation.
• APDA (American Parkinson Disease Association): US national Parkinson's information, education, and support organisation. Spotlight YOPD's own website cites APDA.org statistics on YOPD prevalence, indicating alignment in the awareness and educational content category.

Others

• World Parkinson Coalition: International umbrella body that organises the World Parkinson Congress, which Spotlight YOPD actively participated in (WPC 2023). Functions as an enabling convener rather than a direct competitor.
• Neurological Alliance: UK umbrella body for neurological conditions; Spotlight YOPD's Barrie Smith represents the charity in Neurological Alliance campaigning, positioning it as a peer in UK neurological advocacy ecosystems.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat3 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xtwitter.com/spotlightyopd
• YouTubeyoutube.com/@youngonsetparkinsons
• Facebookfacebook.com/SpotlightYOPD
• LinkedInlinkedin.com/company/spotlightyopd
• Instagraminstagram.com/spotlightyopd

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 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 Spotlight YOPD (Registered Charity UK)