Hope in Focus
Hope in Focus is a 501(c)(3) patient advocacy nonprofit that supports individuals and families affected by Leber congenital amaurosis and rare inherited retinal diseases through education, community programs, and research fundraising, serving patients across 32+ countries.
- Company typePrivate
- Founded2014
- HeadquartersLedyard, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Hope in Focus does
Hope in Focus is a 501(c)(3) patient advocacy nonprofit (EIN 46-4552134) headquartered in Ledyard, Connecticut, that supports individuals and families affected by Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs). Founded in 2014 by Laura Manfre and Charles Priebe under the name Sofia Sees Hope and rebranded to Hope in Focus in 2025, the organization delivers a unified portfolio of community, education, and research-funding programs rather than a technology product. Core programs include the biennial LCA Family Conference, a podcast, webinars and video content, an e-newsletter, the Family Connections program, the Ambassador peer-support program, a patient registry, genetic testing resources, and clinical trial information.
The underlying "technology" is a content and community platform: a website (hopeinfocus.org), a podcast on SoundCloud, social channels, and structured educational assets covering 27+ LCA-causing genetic mutations and the LCA Therapy Development Pipeline. Revenue mechanics come entirely from donations and event income: individual donations, the annual Dinner in the Dark fundraiser at Foxwoods Resort Casino (with tiered tickets at $175 per person and a 20/20 Vision Patron Table at $2,020), corporate sponsorships (Opus Genetics, Atsena Therapeutics, Simply Majestic, Drink Caffeine, Genentech), and grants (e.g., the $5,000 Amgen RAREis Global Advocate Grant in September 2024). Strategic partnerships with gene therapy developers (Opus Genetics, Atsena, MeiraGTx, Sepul Bio, Odylia) and rare-disease organizations (Foundation Fighting Blindness, NORD, Global Genes) position the organization as the connective tissue between LCA patients and the clinical development pipeline.
Go-to-market is community-led: Hope in Focus reaches newly diagnosed families through ambassadors and the Family Connections program, retains them through recurring touchpoints (podcast, newsletter, webinars), and convenes the broader ecosystem at the LCA Family Conference, which drew 135 attendees in Minneapolis in 2025. The organization has raised $2.5M+ cumulatively since founding and claims reach across 32+ countries, operating with a small staff of 1–10 led by Executive Director Courtney Coates (promoted June 2025) and Board Chair Laura Manfre.
Hope in Focus firmographics
Firmographics- Name
- Hope in Focus
- Legal name
- Hope in Focus
- Website
- https://hopeinfocus.org
- Company type
- Private
- Founded year
- 2014
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Hope in Focus is a 501(c)(3) patient advocacy nonprofit that supports individuals and families affected by Leber congenital amaurosis and rare inherited retinal diseases through education, community programs, and research fundraising, serving patients across 32+ countries.
- Ownership category
- akta.pro rank
Hope in Focus industry classification
Industry- Product category
- Patient Advocacy / Rare Disease Nonprofits
- NAICS
- Other Individual and Family Services (624190), Child and Youth Services (62411)
- SIC
- Services-Social Services (8300), Services-Membership Organizations (8600)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industries
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Mental Health & Crisis Support Services (BPAGACAD)
Keywords
Where Hope in Focus is headquartered
LocationHeadquarters
- HQ city
- Ledyard
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Hope in Focus business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Marketing or Sales, Operations, Others
Revenue model
- Individual Donations: Individual donors contribute directly to support research and community programs. The organization accepts donations through its website and various fundraising initiatives.
- Signature Fundraising Events: Annual Dinner in the Dark events at Foxwoods Resort Casino generate significant revenue. The 2025 event raised over $190,000 with 260 attendees. The 2024 event raised over $225,000 with 330 attendees.
- Corporate Sponsorships: Corporate sponsors including Opus Genetics, Atsena Therapeutics, Simply Majestic, Drink Caffeine, and others provide financial support and sponsorship for events and programs.
- Grants: Hope in Focus receives grants such as the $5,000 RAREis Global Advocate Grant from Amgen in September 2024.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | One-time | Individual tickets for Dinner in the Dark event |
| Other | One-time | Patron table sponsorship |
| Other | One-time | Event sponsorships |
Go-to-market motion1 record
Distribution channels1 record
Marketing channels8 records
Hope in Focus product offering
Product offeringCore offering
Hope in Focus is a nonprofit patient advocacy organization that supports individuals and families affected by Leber congenital amaurosis (LCA) and other rare inherited retinal diseases through education, peer-support programs, and fundraising for research. Its core offerings include the LCA Family Conference, podcast, newsletter, videos and webinars, a Family Connections program, an Ambassador peer-support network, and resources on genetic testing, the LCA therapy development pipeline, clinical trial information, and a patient registry. The organization funds its mission through individual donations, corporate sponsorships, grants, and signature fundraisers such as Dinner in the Dark.
Product overview
Hope in Focus is a nonprofit patient advocacy organization offering a unified portfolio of community support, education, and awareness programs rather than a technology product suite. The core offerings include the LCA Family Conference (annual gathering), Podcast, Newsletter, Videos & Webinars, Family Connections Program, Ambassador Program, and resources covering LCA therapy development, patient registry, genetic testing, clinical trials, and community stories. Fundraising events include Dinner in the Dark and Party for Sight. These programs work together to connect the LCA community, advance research awareness, and support families throughout their journey.
Differentiator
Problem solved
Functional benefit
Products and services
- LCA Family Conference Annual/biennial educational conference bringing together families affected by LCA, researchers, clinicians, and advocates to exchange knowledge, share experiences, and strengthen the global LCA/IRD community. Aimed at LCA patients, families, clinicians, and researchers.
- Dinner in the Dark
Quantifiable outcome
- Supported LCA community since 2014 with education, resources, and connections
- +1 more outcomes
Companies that use Hope in Focus
Customer profileNamed customers4 records
Segments1 record
Ideal customer profiles3 records
Hope in Focus technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Hope in Focus partnerships and signals
Strategic signalPartnerships
Seven partnerships are on record, tiered core and major.
- Opus GeneticscoreOpus Genetics is a Hope in Focus partner developing OPGx-LCA5 gene therapy for LCA5. The company reached FDA alignment for Phase 3 clinical trial design. Hope in Focus provides patient advocacy support and helps connect patients with clinical trial opportunities.
- Foundation Fighting BlindnesscoreFoundation Fighting Blindness is a key partner providing research updates, clinical trial information, and collaboration on patient advocacy. They hosted the Retinal Therapeutics Innovation Summit and partner on the LCA Family Conference.
- Sepul BiocoreSepul Bio is a partner developing antisense oligonucleotide therapies for LCA10 and USH2A. Hope in Focus provides patient input for clinical development programs. Sepul Bio sponsors the LCA Family Conference.
- MeiraGTxcoreMeiraGTx is a partner developing gene therapies including treatments for LCA4 and XLRP. They sponsor the LCA Family Conference and are advancing treatments toward FDA approval.
- Odylia TherapeuticscoreOdylia Therapeutics is a nonprofit developing gene therapies for rare diseases including LCA6 (RPGRIP1). The organization was featured on the Hope in Focus podcast and is advancing toward clinical trials.
- National Organization for Rare Disorders (NORD)majorNORD is a rare disease organization affiliated with Hope in Focus, providing additional resources and advocacy support for the rare disease community.
- Global GenesmajorGlobal Genes is a rare disease advocacy organization partnered with Hope in Focus to support the IRD community.
Scale indicators7 records
Recent moves7 records
Expansion highlights5 records
Hope in Focus competitors and assessment
Company assessmentDirect peers
- Global Genes: A rare disease advocacy nonprofit that partners directly with Hope in Focus. It is comparable because it serves as a broader umbrella for rare disease communities with similar education, advocacy, and patient-support programming aimed at underserved disease populations.
- Fight for Sight: A nonprofit funding vision-loss research and supporting early-career ophthalmology researchers. It is comparable because it channels donor dollars into eye research and patient impact — including IRD-adjacent work — sharing overlapping donor audiences with Hope in Focus.
- Foundation Fighting Blindness: The largest US nonprofit focused on inherited retinal diseases, funding research and advocating for treatments. It is the most directly comparable peer because it overlaps with Hope in Focus on LCA/IRD patient education, research funding, and co-hosted events like the LCA Family Conference.
- Curing Retinal Blindness Foundation: A small disease-specific nonprofit focused on CRB1-related retinal disease, supporting research, families, and clinical trial recruitment. It is comparable because it operates an essentially identical model to Hope in Focus (single-gene LCA/IRD focus, family conferences, research funding) for a different mutation, representing the most direct substitute peer.
- Choroideremia Research Foundation: A disease-specific patient advocacy and research funding nonprofit for choroideremia, an inherited retinal disease. It is comparable because it mirrors Hope in Focus's gene-specific community, research funding, and clinical-trial-recruitment model within the same IRD therapeutic category.
Regional players
- Retina International: An umbrella patient advocacy organization for inherited retinal diseases operating primarily in Europe and globally. It is comparable as an IRD-focused advocacy, education, and research-funding peer but with a transatlantic/European center of gravity rather than US-based like Hope in Focus.
Broad incumbents
- National Organization for Rare Disorders (NORD): The largest US rare disease umbrella organization, affiliated with Hope in Focus and offering grants, advocacy, and patient resources. It is comparable as a cross-disease nonprofit serving the same patient-advocacy and research-funding functions but at a much broader and more institutionalized scale.
- Prevent Blindness: An established US nonprofit focused on eye health and vision loss prevention across many conditions. It is comparable because it funds vision research, advocates for patients, and delivers public education — but at a broader ophthalmic scale that includes, but is not specific to, inherited retinal diseases.
- American Foundation for the Blind: A long-established national nonprofit advocating for people with vision loss across all causes. It is comparable as an advocacy and resource provider for visually impaired individuals but operates at a much broader, less gene-specific level than Hope in Focus.
Emerging players
- RD-CURE (RD-Cure Consortium / RDH12 Foundation): A small disease-specific patient advocacy and research organization focused on RDH12-related retinal disease. It is comparable because it operates the same single-gene LCA/IRD advocacy and research-funding playbook as Hope in Focus and represents an emerging peer with potential to scale along similar lines.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat4 records
Key risks5 records
Key highlights5 records
Customer concentration
Hope in Focus social profiles
Digital presenceHope in Focus compliance and trust
Trust signalCompliance5 records
Hope in Focus financial estimates
Financial estimateRevenue estimate
Valuation estimate
Hope in Focus leadership team
Management profileNumber of profiles
Profiles4 records
Hope in Focus funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Hope in Focus 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 Hope in Focus
What does Hope in Focus do?
Hope in Focus is a nonprofit patient advocacy organization that supports individuals and families affected by Leber congenital amaurosis (LCA) and other rare inherited retinal diseases through education, peer-support programs, and fundraising for research. Its core offerings include the LCA Family Conference, podcast, newsletter, videos and webinars, a Family Connections program, an Ambassador peer-support network, and resources on genetic testing, the LCA therapy development pipeline, clinical trial information, and a patient registry. The organization funds its mission through individual donations, corporate sponsorships, grants, and signature fundraisers such as Dinner in the Dark.
Is Hope in Focus a public or private company?
Hope in Focus is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Hope in Focus founded?
Hope in Focus was founded in 2014. It employs 1 to 10 people.
Where is Hope in Focus based?
Hope in Focus is headquartered in Ledyard, United States, in the North America region.
How does Hope in Focus make money?
Four revenue lines are on record. Individual Donations are the primary driver. The others are signature Fundraising Events, corporate Sponsorships and grants.
Who are Hope in Focus's main competitors?
Direct peers on record are Global Genes, Fight for Sight, Foundation Fighting Blindness, Curing Retinal Blindness Foundation and Choroideremia Research Foundation. Retina International is listed as a regional player. Broad incumbents are National Organization for Rare Disorders (NORD), Prevent Blindness and American Foundation for the Blind. RD-CURE (RD-Cure Consortium / RDH12 Foundation) is listed as an emerging player.
Does Hope in Focus have an API?
No public API is recorded for Hope in Focus.
What industry is Hope in Focus in?
Hope in Focus's product category is Patient Advocacy / Rare Disease Nonprofits. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 624190 and its SIC code is 8300.