Her ALS Story
Her ALS Story is a U.S. nonprofit providing community, resources, and advocacy for women diagnosed with ALS before age 35 through annual retreats, member storytelling, co-branded merchandise, and a network of partner ALS organizations.
- Company typePrivate
- Founded2021
- Headquarters—
- Headcount11–50
- GTM typeB2C
- OfferingServices
What Her ALS Story does
Her ALS Story is a U.S.-based nonprofit organization that provides community, resources, and advocacy for women diagnosed with Amyotrophic Lateral Sclerosis (ALS) before age 35 — a demographic that is underrepresented in the broader ALS patient population and typically served by organizations focused on older adults. Founded by Leah Stavenhagen following her own diagnosis at age 27, the organization operates a community-led model centered on annual multi-day retreats in Cape Cod, Massachusetts (the 2025 retreat was the 4th annual event and drew 35 participants), member-authored blog storytelling, an Instagram presence (@herALSstory), and an active earned-media footprint in outlets including The New York Times, People Magazine, NBC Boston, PBS, and dedicated ALS publications.
The organization does not develop proprietary technology. Its core "product surface" consists of a peer community platform (blog, social, retreats), a Bonfire storefront selling custom apparel and accessories, co-branded merchandise with Old York Cellars (limited-edition wine), Fluff Hardware (earrings, 30% of purchase benefits HAS), and Joya Studio (Bright Spot candle), plus an Amazon Storefront curating adaptive equipment and assistive technology for ALS daily living. It also hosts a Life Hacks section recommending adaptive products.
Her ALS Story's revenue is derived from donations (processed via the Givelively platform under the HARK ALS umbrella), merchandise sales (Bonfire storefront, co-branded SKUs), and percentage-based partnership revenue (e.g., 30% affiliate share from Fluff Hardware). Donations are unrestricted at the donor's discretion; merchandise is sold at one-time/perpetual license price points (estimated $25-$35 for apparel). The organization partners with approximately 25 ALS-related nonprofits and corporate sponsors — including Project ALS, CCALS, Team Gleason, ALS One, ALS TDI, I AM ALS, Biogen, Tobii Dynavox, and Dutch Bros — forming a referral and resource ecosystem within the broader ALS advocacy landscape. Following the February 2026 passing of founder Leah Stavenhagen at age 33, the leadership team has assumed continued operations to carry the mission forward.
Her ALS Story firmographics
Firmographics- Name
- Her ALS Story
- Legal name
- Her ALS Story
- Website
- https://heralsstory.org
- Company type
- Private
- Founded year
- 2021
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- Her ALS Story is a U.S. nonprofit providing community, resources, and advocacy for women diagnosed with ALS before age 35 through annual retreats, member storytelling, co-branded merchandise, and a network of partner ALS organizations.
- Ownership category
- akta.pro rank
Her ALS Story industry classification
Industry- Product category
- Patient Advocacy and Community Support Services
- NAICS
- Voluntary Health Organizations (813212)
- SIC
- Services-Membership Organizations (8600)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Her ALS Story business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others
Revenue model
- Donations: The organization accepts donations through Givelively platform (linked on their website). Donations support Her ALS Story initiatives, promising research, and organizations providing resources to help those with ALS lead better, longer lives.
- Merchandise Sales: Sale of custom merchandise including apparel (t-shirts, sweatshirts, hats, tanks), accessories, and partnership products. All proceeds directly fund HAS initiatives. Products sold through Bonfire storefront, with additional partner products from Old York Cellars (wine collection), Fluff Hardware (earrings), and Joya Studio (candles).
- Partnership Revenue: Revenue generated through percentage-based partnerships where partners donate a portion of sales to the organization, such as 30% of Fluff Hardware earring purchases going directly to benefit HAS programs.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| One time/ perpetual license | Pay-as-you-go | Merchandise products with varying price points |
Go-to-market motion1 record
Distribution channels5 records
Marketing channels5 records
Her ALS Story product offering
Product offeringCore offering
Her ALS Story is a nonprofit community organization that provides peer support, advocacy, and resources specifically for young women diagnosed with ALS before age 35. Its core offerings include an annual multi-day retreat in Cape Cod, Massachusetts, a blog and member-story platform, a Life Hacks library of adaptive product recommendations, and fundraising merchandise sold through a Bonfire storefront and partner brands. All proceeds from donations and merchandise support the organization's initiatives, ALS research, and partner organizations.
Product overview
Her ALS Story is a community advocacy organization (not a technology product company) that provides a peer support community for young women diagnosed with ALS before age 35. The organization's primary offerings include: (1) A peer community platform with member stories, blog content, and annual retreats; (2) Fundraising merchandise including custom apparel sold through Bonfire; (3) Co-branded products with partners including limited-edition wine (Old York Cellars), jewelry (Fluff Hardware), and candles (Joya Studio); (4) An Amazon Storefront featuring curated adaptive products and equipment recommendations for ALS patients. All merchandise proceeds fund HAS initiatives, promising research, and ALS resources.
Differentiator
Problem solved
Functional benefit
Products and services
- Custom HAS Merchandise (Bonfire Store) Custom merchandise designed by HAS members—including t-shirts, sweatshirts, hats, and tanks—sold through the Bonfire storefront. All proceeds directly fund HAS initiatives, promising ALS research, and partner organizations.
- Limited-Edition Wine Collection (Old York Cellars) Limited-edition wine collection (red, white, and rosé) created by Old York Cellars specifically for Her ALS Story. Proceeds directly fund HAS initiatives.
- HAS Droplet Pendant Earrings (Fluff Hardware) Gold/silver earrings designed by Fluff Hardware specifically for Her ALS Story. 30% of the purchase price goes directly to benefit HAS programs.
- HAS Mother of Pearl Hoop Earrings (Fluff Hardware) Mother of pearl hoop earrings designed by Fluff Hardware for Her ALS Story; part of the partnership collection supporting HAS programs.
- Bright Spot Candle (Joya Studio Partnership) Limited-edition Year of the Tiger Bright Spot candle from Joya Studio partnership. All net proceeds directly fund HAS initiatives.
- Amazon Storefront (Life Hacks Product Recommendations) Amazon Storefront compiling products used by HAS members to facilitate everyday life, including adaptive utensils, mobility aids, bedroom/bathroom adaptive equipment, clothing/footwear, and technology devices. Operates as a resource/recommendation platform for the ALS community.
- Annual Cape Cod Retreat Multi-day annual retreat hosted at Sea Crest Resort in Cape Cod, Massachusetts, bringing together young women with ALS for community connection, peer support, recreation, and celebration. The 2025 retreat (4th annual) hosted 35 women in various stages of ALS.
Companies that use Her ALS Story
Customer profileSegments1 record
Ideal customer profiles1 record
Her ALS Story technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Her ALS Story partnerships and signals
Strategic signalPartnerships
20 partnerships are on record, tiered core and minor.
- Project ALScoreProject ALS is a key partner organization. Her ALS Story spoke at the 2021 Project ALS Gala, indicating a significant collaborative relationship focused on ALS research and awareness.
- Compassionate Care ALS (CCALS)coreCCALS provides equipment loans and support at HAS retreats. Ron from CCALS addressed retreat attendees. CCALS helped facilitate beach wheelchair access at retreats.
- BiogenminorPharmaceutical company focused on ALS treatments listed as a partner/sponsor on the HAS partnerships page.
- Tobii DynavoxcoreEye-tracking communication technology partner whose devices are used by HAS members for communication. Listed as a partner supporting the organization.
- Team GleasoncoreALS nonprofit organization providing equipment and resources. Team Gleason has gifted mobility devices to HAS members.
- ALS OnecoreALS research and support organization. Jen from ALS One addressed HAS retreat attendees. Provides support at retreats including airport shuttles.
- Live Like LouminorALS organization listed as a partner/sponsor on the HAS partnerships page.
- HARK ALSminorParent organization through which Her ALS Story receives donations via Givelively platform.
- axeALSminorALS organization listed as a partner/sponsor on the HAS partnerships page.
- Old York CellarsminorWinemaker created a limited-edition wine collection for Her ALS Story with proceeds funding HAS initiatives.
- Fluff HardwareminorDesigner created gold/silver earrings specifically for Her ALS Story. 30% of the purchase price goes directly to benefit HAS programs.
- Joya StudiominorPartnered with HAS to create the Bright Spot Candle, part of limited-edition collection. All net proceeds fund HAS initiatives.
- ALS TDIminorALS Therapy Development Institute listed as a partner/sponsor on the HAS partnerships page.
- ALS OhiominorRegional ALS organization listed as a partner/sponsor.
- ALS United ChicagominorRegional ALS organization listed as a partner/sponsor.
- ALS United ConnecticutminorRegional ALS organization listed as a partner/sponsor.
- ALS Mid-AtlanticminorRegional ALS organization listed as a partner/sponsor.
- I AM ALSminorALS advocacy organization listed as a partner/sponsor.
- Ales 4 ALS (A4A)minorALS awareness initiative. HAS participated in Ales for ALS at Beers Without Beards Festival in Portland, ME.
- Dutch BrosminorBeverage company listed as a partner supporting the organization.
Scale indicators5 records
Recent moves6 records
Expansion highlights4 records
Her ALS Story competitors and assessment
Company assessmentBroad incumbents
- ALS United: Network of regional ALS organizations providing care services across the US. Broad incumbent serving overlapping patient communities and whose regional chapters (ALS United Chicago, Connecticut, Mid-Atlantic) are listed HAS partners.
- The ALS Association: National largest ALS nonprofit providing research funding, care services, and advocacy. Broad incumbent serving the same patient population through a wider portfolio of programs versus HAS's narrow niche focus.
Direct peers
- I AM ALS: Patient-led ALS advocacy organization focused on policy, research funding, and community. Direct peer in ALS patient advocacy and listed as a partner of HAS.
- Live Like Lou: ALS nonprofit supporting families and research, named after Lou Gehrig. Direct peer in ALS patient/family support and listed partner of HAS.
- Project ALS: ALS-focused nonprofit funding research and patient resources. Direct peer as a disease-specific ALS organization partnered with Her ALS Story and serving overlapping patient/family communities.
- Les Turner ALS Foundation: Chicago-based ALS nonprofit providing support services, research grants, and clinical care. Direct peer in patient services and a comparable disease-specific support organization.
- ALS Therapy Development Institute (ALS TDI): The world's largest ALS-dedicated drug discovery laboratory and research organization. Direct peer as an ALS-focused nonprofit, and a listed partner/sponsor of HAS.
- Team Gleason: ALS nonprofit providing equipment, technology, and adventure experiences to people living with ALS. Direct peer in mission and beneficiary base, and an active equipment partner of HAS.
- Compassionate Care ALS (CCALS): Family-focused ALS support organization providing equipment loans, education, and retreats. Direct peer in direct-service ALS support and listed core partner of HAS.
- HARK ALS: ALS nonprofit acting as the fiscal umbrella for Her ALS Story's donations via Givelively. Direct peer in ALS support services and an organizational partner of HAS.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat3 records
Key risks5 records
Key highlights7 records
Customer concentration
Her ALS Story social profiles
Digital presenceHer ALS Story financial estimates
Financial estimateRevenue estimate
Valuation estimate
Her ALS Story leadership team
Management profileNumber of profiles
Her ALS Story funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Her ALS Story M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Her ALS Story
What does Her ALS Story do?
Her ALS Story is a nonprofit community organization that provides peer support, advocacy, and resources specifically for young women diagnosed with ALS before age 35. Its core offerings include an annual multi-day retreat in Cape Cod, Massachusetts, a blog and member-story platform, a Life Hacks library of adaptive product recommendations, and fundraising merchandise sold through a Bonfire storefront and partner brands. All proceeds from donations and merchandise support the organization's initiatives, ALS research, and partner organizations.
Is Her ALS Story a public or private company?
Her ALS Story is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Her ALS Story founded?
Her ALS Story was founded in 2021. It employs 11 to 50 people.
How does Her ALS Story make money?
Three revenue lines are on record. Donations are the primary driver. The others are merchandise Sales and partnership Revenue.
Who are Her ALS Story's main competitors?
Broad incumbents on record are ALS United and The ALS Association. Direct peers are I AM ALS, Live Like Lou, Project ALS, Les Turner ALS Foundation, ALS Therapy Development Institute (ALS TDI), Team Gleason, Compassionate Care ALS (CCALS) and HARK ALS.
Does Her ALS Story have an API?
No public API is recorded for Her ALS Story.
What industry is Her ALS Story in?
Her ALS Story's product category is Patient Advocacy and Community Support Services. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212 and its SIC code is 8600.