ROCKY MOUNTAIN RETT ASSOCIATION

What ROCKY MOUNTAIN RETT ASSOCIATION does

Rocky Mountain Rett Association (RMRA) is a 501(c)(3) nonprofit organization headquartered in Morrison, Colorado, that supports individuals and families affected by Rett Syndrome and related disorders across the Rocky Mountain region. Founded in the early 2010s, RMRA's primary programmatic activity is funding and stewarding the multidisciplinary Rett Clinic at Children's Hospital Colorado, including a dedicated Rett Clinic Coordinator role that serves as the bridge between families and clinical care. The organization has earned Center of Excellence designations from three separate rare-disease foundations — the International Rett Syndrome Foundation, IFCR, and FOXG1 Research Foundation — and most recently extended its clinic scope to include CDKL5 Deficiency Disorder.

RMRA's core product is the integrated clinical-plus-community service package: families receive access to a specialized Rett clinic, curated educational resources (the Rett Resources library, therapy guides), and a calendar of recurring community events including Mardi Gras Fête, Risers 4 Rett (co-ed and Girls on the Rise), Roll 4 Rett, Adaptive Ski Day, and Community Education Day. The organization also partners with therapeutic developers (Acadia Pharmaceuticals for trofinetide, Neurogene for the NGN-401 gene therapy trial) and research foundations (IRSF, IFCR, RSRT, FOXG1) to amplify awareness of emerging treatments.

RMRA's business model is donor-funded event-based fundraising. The organization runs multiple ticketed and sponsored events throughout the year, with the Mardi Gras Fête as the flagship (gross proceeds grew from approximately $42,000 in 2024 to over $60,000 in 2025 after the introduction of expanded table sponsorships and a $25,000 top-tier package). Other events include fly-fishing tournaments, a cycling fundraiser, adaptive ski day, and an education day. The organization is volunteer-led with a 1–10 employee footprint and has recently professionalized its executive leadership by hiring Scott Henley as Executive Director.

Name

ROCKY MOUNTAIN RETT ASSOCIATION

Legal name

Rocky Mountain Rett Association

Website

https://rmrett.org

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

1–10 employees

Short description

Rocky Mountain Rett Association is a 501(c)(3) nonprofit that supports Rett Syndrome families across the Rocky Mountain region by funding and stewarding the multidisciplinary Rett Clinic at Children's Hospital Colorado and running recurring fundraising and community events.

Ownership category

akta.pro rank

Product category

Nonprofit Rare Disease Support Services

NAICS

Other Individual and Family Services (624190), Child and Youth Services (62411), Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300)

akta.pro primary industry

Pediatric Rehabilitation & Developmental Therapy Centers (PT/OT/SLP) (HLAFAJAL)

akta.pro secondary industries

Wraparound & Community-Based Behavioral Support (ABA-Adjacent) (EDAKAHAO), Behavioral Health & Substance Use Program Funding (Public Health) (HLAJALAI)

Keywords

• Rett Syndrome support
• Family advocacy services
• Pediatric rare disease fundraising
• Disability community events
• Nonprofit family resources

Headquarters

HQ city

Morrison

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: RMRA raises funds through various events including the annual Mardi Gras Fête, Risers 4 Rett fly-fishing tournaments, Roll 4 Rett events, and other community fundraisers. All proceeds support the Rett Clinic at Children's Hospital Colorado.
2. Event-based Fundraising: Revenue generated from ticket sales, sponsorships, and auctions at events like Mardi Gras Fête, Women's Fly Fishing Events, and other community activities.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels5 records

Core offering

Rocky Mountain Rett Association (RMRA) maintains and funds the Rett Clinic at Children's Hospital Colorado, a multidisciplinary clinic where up to 15 sub-specialty providers and therapists deliver comprehensive evaluations for children with Rett Syndrome in a single-room setting. The organization also hosts annual fundraising events (Mardi Gras Fête gala, Risers 4 Rett fly-fishing tournaments, Roll 4 Rett family events, Adaptive Ski Day, and Community Education Day), and publishes educational resources covering therapy options, Medicaid waiver guidance, and provider listings along Colorado's Front Range.

Product overview

Rocky Mountain Rett Association operates as a nonprofit organization offering a portfolio of fundraising events and family support services for Rett Syndrome. The core offering is maintaining and funding the Rett Clinic at Children's Hospital Colorado, which provides multidisciplinary care in a single-room setting with up to 15 sub-specialty providers. Supporting services include annual events (Mardi Gras Fête galas, Risers 4 Rett fly-fishing tournaments, Roll 4 Rett wheelchair events, Adaptive Ski Days, Community Education Days), educational resources covering therapy options and provider listings, and an online merchandise shop. These programs work together to raise funds for the clinic, support families, and advance research toward a cure.

Differentiator

Problem solved

Functional benefit

Brands

• Risers 4 Rett (R4R): A subcommittee of RMRA that organizes fly-fishing tournaments and outdoor fundraising events to support the Rett Clinic.

Products and services

• Rett Clinic at Children's Hospital Colorado Multidisciplinary clinic maintained and funded by RMRA where Rett families stay in one room and up to 15 sub-specialty providers rotate to the patient, delivering a comprehensive evaluation in one afternoon.
• Mardi Gras Fête Annual fundraising gala with Creole cuisine, casino tables, live auctions, and entertainment; 2024 event raised $42,000 and 2025 event raised over $60,000 to benefit the Rett Clinic.
• Risers 4 Rett Fly-Fishing Tournaments Twice-yearly fly-fishing tournaments at Almont Resort in Colorado with up to 24-30 two-person teams, plus Women's Fly Fishing Events and Girls on the Rise casting clinics for girls age 7+.
• Roll 4 Rett Annual family BBQ and wheelchair rolling event held at Clement Park during Rett Syndrome Awareness Month, featuring adaptive activities, DJ entertainment, and community gathering; sponsored by Acadia Pharmaceuticals.
• Adaptive Ski Day Adaptive skiing event at Breckenridge Ski Resort hosted by the Breckenridge Outdoor Education Center, providing sit-skis and trained instructors for individuals with Rett Syndrome; full-day $235, half-day $150.
• Community Education Day Annual hybrid (in-person and livestreamed) educational event with speaker sessions on Rett Syndrome research, genetics, nutrition, communication, and family resources, held at Children's Hospital Colorado.
• Rett Resources Educational resource library covering speech, physical, occupational, nutritional, equine, music, hydrotherapy, massage, and behavioral therapies, plus provider listings along Colorado's Front Range and Medicaid waiver guidance.
• RMRA Rett Shop Online merchandise shop featuring RMRA branded items and specialty blankets, including Buy One Give One programs with partners like Minky Couture.

Quantifiable outcome

• Every $1,000 raised allows a Rett child to visit 15 providers at the Rett Clinic

Named customers4 records

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Twelve partnerships are on record, tiered core and minor.

• Children's Hospital ColoradocoreStrategic or Co-development PartnerPartnership since 2011. RMRA funds the establishment and ongoing operations of the Rett Clinic at Children's Hospital Colorado. The clinic provides multidisciplinary care for Rett children with up to 15 sub-specialty providers.
• International Rett Syndrome Foundation (IRSF)coreStrategic or Co-development PartnerIRSF provides Center of Excellence designation to the Rett Clinic and supports research efforts. RMRA partners with IRSF for events like ASCEND conferences.
• International Foundation for CDKL5 Research (IFCR)coreStrategic or Co-development PartnerIFCR partnered with RMRA to create the first CDKL5 Center of Excellence within the Rett Clinic at Children's Hospital Colorado.
• Rett Syndrome Research Trust (RSRT)coreStrategic or Co-development PartnerRSRT has invested more than $42 million in Rett research globally. RMRA works with RSRT on research initiatives and clinical trials.
• Acadia PharmaceuticalsminorGTM or Marketing PartnerSponsor for Roll 4 Rett events and community activities. Supports RMRA events free for families.
• Brown ForemanminorGTM or Marketing PartnerDonated premium cocktails for open bar at Mardi Gras events.
• First BankminorGTM or Marketing PartnerSponsor for Mardi Gras Fête events.
• Minky CoutureminorGTM or Marketing PartnerDonated 200 specialty blankets for RMRA events and Buy One Give One auction items.
• NeurogeneminorStrategic or Co-development PartnerClinical trial partner for NGN-401 gene therapy trial at the Rett Clinic.
• Breckenridge Outdoor Education Center (BOEC)minorStrategic or Co-development PartnerProvides adaptive skiing programs for Rett children at Breckenridge Ski Resort.
• High Ride CycleminorGTM or Marketing PartnerPartner for Ride 4 Rett spin class fundraisers.
• Solace Pediatric HealthcareminorOthersRecommended by Rett families for in-home occupational therapy and speech therapy along the Front Range.

Scale indicators7 records

Recent moves4 records

Expansion highlights5 records

Others

• Children's Hospital Colorado Foundation: Philanthropic arm of RMRA's core hospital partner. Comparable as a hospital-affiliated children's health foundation, and a strategic counterparty for RMRA's clinic funding model.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for all rare diseases (7,000+ conditions). Operates as a broader-incumbent that aggregates and amplifies the work of disease-specific groups like RMRA.
• Child Neurology Foundation: Nonprofit supporting children with neurological conditions broadly, including Rett Syndrome. Comparable as a pediatric neurology family-support organization but at a broader category level.
• EveryLife Foundation for Rare Diseases: Rare disease policy advocacy nonprofit. Adjacent peer in the rare-disease nonprofit ecosystem that complements disease-specific groups with federal policy and funding advocacy.
• Make-A-Wish Foundation: Large national nonprofit granting wishes to children with critical illnesses. Comparable as a children's disease-support nonprofit with established event-based fundraising, sponsorship, and volunteer infrastructure (RMRA board member Abby Boyer previously worked at Make-A-Wish).

Direct peers

• International Rett Syndrome Foundation: National U.S. nonprofit serving the same Rett Syndrome patient population with advocacy, research funding, and family support. Directly comparable mission, donor base, and Center of Excellence designation program — RMRA is a regional affiliate/partner.
• Rett Syndrome Research Trust: Rett-specific research-focused nonprofit that has invested $42M+ globally into curative research. Direct functional peer on the research/clinical-trial partnership axis and a current RMRA partner.
• International Foundation for CDKL5 Research: Patient-advocacy and research nonprofit for CDKL5 deficiency disorder. Operates the same Center of Excellence model that RMRA's clinic holds; directly comparable rare pediatric neurology nonprofit structure.
• Cure SMA: Spinal muscular atrophy patient advocacy and research funding nonprofit. Highly comparable operational model — disease-specific family support, clinic partnerships, major fundraising events, and pharma/biotech trial partnerships (e.g., Spinraza, Zolgensma).
• FOXG1 Research Foundation: Family-driven rare disease nonprofit for FOXG1 syndrome. Peer to RMRA on the small-patient-population, Center-of-Excellence-designated, family-driven fundraising model.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat3 records

Key risks5 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/rocky-mountain-rett-association
• Instagraminstagram.com/rmra

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about ROCKY MOUNTAIN RETT ASSOCIATION