Helen’s Pink Sky Foundation

What Helen’s Pink Sky Foundation does

Helen's Pink Sky Foundation is a 501(c)(3) public charity (EIN 33-4330209) founded in April 2025 and headquartered in Minnesota, USA, following the March 2025 diagnosis of Helen Betty Born with CLN2 Batten disease. The foundation's mission centers on advocacy, research funding, and family care for children affected by CLN2 and other forms of Batten disease, with a stated four-year goal to raise $10 million from March 2025 to support a world-class scientific team and clinical trial infrastructure.

The foundation operates four primary revenue streams: tax-deductible individual donations (one-time or recurring, with suggested tiers from $100 to $10,000) processed online via credit card, PayPal, Venmo, and Apple Pay; a four-tier corporate sponsorship program (Community $2,500, Supporter $5,000, Advocate $10,000, Champion of Hope $20,000); an e-commerce merchandise storefront of approximately 38 branded products priced from $3.50 to $91.50; and event-based fundraising including annual galas and pink lemonade stand community events with QR-code-linked peer-to-peer donations. Distribution is primarily direct-to-consumer through the foundation's website (hope4helen.org) and in-person events, supported by organic social media, an email newsletter, and PR/earned media coverage.

The foundation has no proprietary technology product; its strategic value derives from coordinating capital and awareness across a curated ecosystem that includes Mayo Clinic (clinical care and enzyme replacement therapy), Sanford Health (in-house scientific research team in Sioux Falls, SD), and Latus Bio (gene therapy investment). It participated as an investor in Latus Bio's $97 million Series A financing in May 2026 to advance LTS-101, an FDA IND-cleared gene therapy for CLN2. Awareness efforts extend to high-visibility motorsports channels via a partnership with Meyer Shank Racing and an Indy 500 presence in May 2025.

Name

Helen’s Pink Sky Foundation

Legal name

Helen's Pink Sky Foundation

Website

https://hope4helen.org

Company type

Private

Founded year

2025

Operating status

Operating

Short description

Helen's Pink Sky Foundation is a Minnesota-based 501(c)(3) nonprofit founded in April 2025 that funds CLN2 Batten disease research, supports affected families, and coordinates capital across clinical, academic, and biotech partners, targeting $10M raised over four years.

Ownership category

akta.pro rank

Product category

Rare Disease Nonprofit Foundation

NAICS

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

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease fundraising
• CLN2 research funding
• Charitable disease foundation
• Nonprofit patient advocacy
• Family support services

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Contributions: Tax-deductible charitable donations from individuals via the foundation's website (credit card/PayPal/Venmo/Apple Pay with 3% fee) and check/stock contributions. The foundation is an IRC 501(c)(3) nonprofit (EIN 33-4330209).
2. Corporate Sponsorship: Four-tiered annual corporate sponsorship program: Community Sponsor ($2,500), Supporter Sponsor ($5,000), Advocate Sponsor ($10,000), and Champion of Hope Sponsor ($20,000), each with corresponding logo placement and promotional benefits.
3. Merchandise Sales: Sale of branded merchandise (apparel, accessories, drinkware, home goods) through the foundation's e-commerce shop, with prices ranging from $3.50 to $91.50. Products sourced as blanks and printed on demand.
4. Event-Based Fundraising: Pink lemonade stand community events and annual gala events as fundraising vehicles, with peer-to-peer fundraising tools (QR codes linking to donation page).

Pricing tiers

Go-to-market motion3 records

Distribution channels3 records

Marketing channels7 records

Core offering

Helen's Pink Sky Foundation is a 501(c)(3) public charity that raises and deploys philanthropic capital to fund scientific research and care for CLN2 Batten disease. Its core offerings are tax-deductible individual donations (one-time and recurring), a four-tiered annual corporate sponsorship program ($2,500–$20,000), community fundraising events (annual gala, pink lemonade stands), and a branded online merchandise storefront (apparel, accessories, drinkware, home goods, stickers), with proceeds directed toward research, family support, and clinical trial infrastructure.

Product overview

Helen's Pink Sky Foundation operates as a nonprofit charitable organization dedicated to funding research for CLN2 Batten disease and supporting affected families. The foundation's primary offerings include direct donation programs and a merchandise store selling branded apparel and accessories. The merchandise includes t-shirts, hoodies, sweatpants, hats, bags, drinkware, blankets, and promotional items - all featuring the foundation's pink sky branding. Proceeds from all merchandise sales and donations fund scientific research initiatives and family support services.

Differentiator

Problem solved

Functional benefit

Products and services

• Branded Merchandise Store Online storefront selling approximately 38 branded SKUs — apparel (t-shirts, hoodies, polo shirts, sweatpants), accessories (hats, bags, patches), drinkware (mugs, tumblers, can coolers), home goods (throw blankets, towels, flags), and stickers — with unit prices ranging from $3.50 to $91.50. Proceeds support CLN2 Batten disease research, advocacy, and family care. Available to individual consumers with domestic and international shipping.
• Corporate Sponsorship Program Annual corporate sponsorship of Helen's Pink Sky Foundation with four commitment tiers — Community Sponsor ($2,500, logo on website), Supporter Sponsor ($5,000, logo plus social media announcement), Advocate Sponsor ($10,000, logo plus social mentions), and Champion of Hope Sponsor ($20,000, premier logo placement, press releases, event apparel, featured social media, and newsletter inclusion). Marketed to companies for cause-marketing and CSR exposure.
• Annual Gala Event Ticketed annual fundraising gala for Helen's Pink Sky Foundation. Tickets sold via givesmart.com with proceeds supporting CLN2 Batten disease research and family care. Marketed to foundation supporters and corporate sponsors.

Quantifiable outcome

• Patient investment in Latus Bio contributing to $97M Series A financing for CLN2 gene therapy (LTS-101) and Huntington's disease gene therapy (LTS-201)
• +2 more outcomes

Named customers1 record

Segments1 record

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Four partnerships are on record, tiered core and minor.

• Sanford HealthcoreStrategic or Co-development Partner · 16 April 2025Helen's scientific research team is based at Sanford Health in Sioux Falls, SD. Foundation leadership (Stephanie and Dan Born) traveled to Sioux Falls on April 16, 2025, to meet with the research team, advancing the foundation's research agenda for CLN2 treatments.
• Mayo CliniccoreStrategic or Co-development Partner · 10 March 2025Helen receives enzyme replacement therapy (infusions) at Mayo Clinic, which conducts 24-hour EEGs, genetic testing, and ongoing CLN2 Batten disease treatment. Mayo Clinic is a key clinical care partner in the foundation's ecosystem.
• Noah's Hope (VanHoutan Family)minorOthersThe VanHoutan family (Tracy and Jen VanHoutan) lost two children to CLN2 Batten disease and founded Noah's Hope. Their advocacy directly led to FDA approval of Brineura in April 2017. The foundation identifies Noah's Hope as its inspirational model and works within the same Batten disease research community.
• Meyer Shank RacingminorGTM or Marketing PartnerTim Meyer, Helen's godfather, is involved in Indycar racing with Meyer Shank Racing. The foundation leverages this connection for Indy 500 presence to raise awareness, with Helen featured at the Indy 500 cheering on Meyer Shank Racing in May 2025.

Scale indicators2 records

Recent moves4 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for the ~7,000 rare diseases in the U.S. NORD represents the broader ecosystem the foundation operates in and competes with for institutional donor attention.
• Cure SMA: Established rare pediatric genetic disease nonprofit that built a multi-decade research-funding, advocacy, and family-support model. Useful comparable for understanding how a Batten-disease foundation could scale to a national rare-disease incumbent.
• Global Genes: Leading rare-disease advocacy and patient-support nonprofit running awareness campaigns, summits, and grant programs. Comparable as a peer-disease advocacy platform that any CLN2 foundation must position against.
• Parent Project Muscular Dystrophy (PPMD): Parent-founded nonprofit that has driven gene therapy development for Duchenne muscular dystrophy — the closest model for how a patient-family-led foundation can successfully steward translational research programs over a decade-plus horizon.

Direct peers

• Cure Batten Foundation: Family-founded nonprofit dedicated to funding research toward treatments and a cure for CLN2 Batten disease. Operates with a similar mission, target disease, and lean operational footprint.
• Noah's Hope: Family-founded 501(c)(3) dedicated to CLN2 Batten disease research and advocacy, established by the VanHoutan family after losing two children to CLN2. The VanHoutans' advocacy helped drive FDA approval of Brineura in April 2017 and is cited by Helen's Pink Sky Foundation as its direct inspirational model.
• Beyond Batten Disease Foundation: Austin, Texas-based nonprofit founded in 2008 specifically to eradicate juvenile Batten disease (CLN3) by funding research and developing a carrier screening test. Direct disease-area overlap and similar family-driven, research-funding model make it one of the closest comparables.
• Batten Disease Support and Research Association (BDSRA): The leading U.S. patient-advocacy and research-support organization for all forms of Batten disease. It is the incumbent the foundation must coordinate with — and partially differentiate from — on research priorities, family services, and donor mindshare.
• Taylor's Tale: Family-led nonprofit funding CLN2 and CLN6 Batten disease research and patient advocacy. Closely aligned disease focus, similar story-driven fundraising approach, and shared research community make it a near-direct peer.

Emerging players

• Foundation for Prader-Willi Research: Parent-driven nonprofit funding research into Prader-Willi syndrome, a rare pediatric genetic neurological disorder. Highly comparable on structure, fundraising mechanics, and translational research focus to Helen's Pink Sky Foundation.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/Helens-Pink-Sky-Foundation
• Instagraminstagram.com/Helens_pinksky

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 records

Funding overview

Funding rounds

Investors

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

M&A

Investments1 record

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

Frequently asked questions about Helen’s Pink Sky Foundation