Texas Neurofibromatosis Foundation

What Texas Neurofibromatosis Foundation does

The Texas Neurofibromatosis Foundation (TNFF) is a 501(c)(3) nonprofit organization founded in 1980 by Doris Kraft of Austin and Dr. Vincent Riccardi of Houston to support the growing population of Texas residents affected by neurofibromatosis (NF), a genetic disorder causing uncontrolled tumor growth along nerves. Headquartered in Flower Mound, Texas (EIN 74-2138345), the foundation provides comfort, support, education, advocacy, and research funding for NF patients and their families across the state.

TNFF operates a portfolio of support programs rather than a unified technology product, including the annual Charline and Red McCombs NF Family Camp (35th year in 2026), the NF Young Adult Leadership Program, the Wagner Scholarship Fund, Hug Club, Birthday Club, NF Stars awareness program, and the Patient Outreach Program with dedicated regional coordinators in Dallas, Houston, and San Antonio/Austin. The foundation funds external NF research grants at Texas institutions including Texas Scottish Rite Hospital for Children, UT Southwestern Medical Center, and MD Anderson Cancer Center, and participates in the NF Network Advocacy Program, which has generated over $600 million in federal NF research funding over 24 years. It is also a founding member of the NF Collective, a multi-organization consortium providing NF provider directory resources.

The foundation's business model is entirely donation- and event-driven: revenue is generated through individual donations, special events (Dining Out in Dallas, Cookies with Santa, North Texas Giving Day), retail loyalty programs (Kroger, Tom Thumb, GoodSearch), and corporate/foundation grants from sponsors including AstraZeneca and SpringWorks Therapeutics. There is no product pricing model — all services to NF patients and families are free. TNFF holds a GuideStar Platinum Seal of Transparency and is an NF Collective Member organization. Distribution is achieved through direct community outreach, social media (Facebook, X/Twitter, Instagram, YouTube), email newsletters, and on-the-ground patient coordinator engagement across three major Texas metropolitan regions.

Name

Texas Neurofibromatosis Foundation

Legal name

The Texas Neurofibromatosis Foundation

Website

https://texasnf.org

Company type

Private

Founded year

1980

Operating status

Operating

Headcount range

11–50 employees

Short description

Texas Neurofibromatosis Foundation is a 501(c)(3) nonprofit founded in 1980 that provides patient support, education, advocacy, and research funding for individuals and families affected by neurofibromatosis across Texas, operating programs including family camp, scholarships, and patient outreach coordinators in Dallas, Houston, and San Antonio/Austin.

Ownership category

akta.pro rank

Product category

Nonprofit Patient Advocacy

NAICS

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

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

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

akta.pro secondary industry

Education Grantmaking Foundations (BPAGAKAK)

Keywords

• Patient advocacy services
• Nonprofit health foundation
• Neurofibromatosis support
• Medical research funding
• Community outreach programs

Headquarters

HQ city

Irving

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Individual Donations: Tax-deductible donations from individuals supporting NF research and patient services. Donors can make gifts in honor of loved ones.
2. Special Events Fundraising: Revenue from events including Dining Out in Dallas, North Texas Giving Day, Cookies with Santa (Dallas, Houston, San Antonio), and annual fundraising activities.
3. Retail Loyalty Programs: Give While You Shop program through Tom Thumb and Kroger loyalty cards, where a portion of qualifying purchases is donated to the foundation.
4. Corporate/Foundation Grants: Funding from foundations and corporate sponsors to support NF research grants and operational support.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels7 records

Core offering

The Texas Neurofibromatosis Foundation is a 501(c)(3) nonprofit that provides free patient support services, education programs, financial assistance, and advocacy for individuals and families affected by neurofibromatosis in Texas. Its offerings include NF Family Camp, the Wagner Scholarship Fund, support groups, the NF Young Adult Leadership Program, Hug Club, Birthday Club, and a federal advocacy program that has helped secure over $600 million in NF research funding.

Product overview

Texas Neurofibromatosis Foundation offers a portfolio of support programs and services for NF patients and families rather than a unified technology product. Core offerings include patient support programs (Hug Club, Birthday Club, NF Stars, NF Support Groups), educational programs (NF Family Camp, NF Young Adult Leadership Program), financial assistance (Wagner Scholarship Fund, Peter Lowry travel assistance), advocacy (NF Network Advocacy Program), and resource directories (NF Collective). The organization primarily functions as a nonprofit support network rather than a technology platform.

Differentiator

Problem solved

Functional benefit

Products and services

• Charline and Red McCombs NF Family Camp Annual family camp held at Camp For All in Burton, TX for NF patients and their families. Activities include arts, crafts, fishing, swimming, ropes course, horseback riding, and sports. Camperships (scholarships) are offered based on financial need.
• NF Young Adult Leadership Program Five-day leadership program for young adults impacted by NF featuring workshops with leadership experts, meetings with Congressional leaders in Washington DC, visits to Congressional offices, and facilitation of the NF Congressional Briefing.
• Wagner Scholarship Fund College scholarship fund awarding at least two students $1,000 each ($500 Fall, $500 Spring) annually. Established in 1998 by Jim and Katy Brownlow in memory of John D. Wagner.
• Patient Outreach Program Program that sends informational packets and brochures to patients, families, physicians, and educators; distributes newsletters; provides physician/clinic referrals; and offers financial assistance funds including the Peter Lowry travel assistance fund.
• NF Support Groups Virtual and in-person support groups including an Adults with NF support group and NF Moms Virtual Coffee Chat, with local groups in Houston, Dallas, and Austin.
• Hug Club Program that sends greeting cards to NF patients who need cheering up, including those with upcoming surgeries or hospitalizations.
• Birthday Club Program that celebrates NF patients' birthdays by sending them cheerful messages and recognition on their special day.
• NF Stars Awareness program celebrating individuals and families from Texas who demonstrate strength and courage in living with neurofibromatosis. Features stories of NF patients and families.
• NF Collective Collaborative online resource providing accurate and reliable NF information including up-to-date listings of NF experts, their contact information, and types of patients they see. A member organization initiative led by a consortium of NF nonprofits.
• NF Network Advocacy Program Federal advocacy program working to secure funds for NF research through Congressional education. Part of the Leadership Council of the NF Network Advocacy Program. Has generated over $600 million for NF research over 24 years of Hill Visit days.
• Donations & Fundraising Charitable donation program supporting NF research funding. Gifts are 100% tax deductible and support clinical trials and research projects. Includes options to make tribute gifts in honor of loved ones.

Named customers1 record

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

13 partnerships are on record, tiered supporting sponsor, core partnership, program sponsor, clinical partner and minor.

• AstraZenecasupporting sponsorStrategic or Co-development PartnerCorporate sponsor supporting Texas NF Foundation's mission and programs
• NF Network Advocacy Programcore partnershipStrategic or Co-development PartnerTexas NF is part of the Leadership Council of NF Network Advocacy Program, leading national NF advocacy to secure federal funds for NF research. Program has generated over $600 million for NF research over 24 years.
• SpringWorks Therapeuticsprogram sponsorStrategic or Co-development PartnerSponsor of NF Family Camp as Lucky Star Sponsor. SpringWorks received FDA approval for GOMEKLI (mirdametinib) for NF1-PN treatment.
• NF Collectivecore partnershipStrategic or Co-development PartnerConsortium of NF organizations including Texas NF, Littlest Tumor Foundation, Neurofibromatosis Network, NF Northeast, NF Midwest, NF Team, and Children's Tumor Foundation. Launched nfcollective.org to provide reliable NF provider information.
• Texas Scottish Rite Hospital for Childrenclinical partnerStrategic or Co-development PartnerTexas NF has funded multiple research grants to this institution for NF-related studies including pseudarthrosis research.
• UT Southwestern Medical Centerclinical partnerStrategic or Co-development PartnerTexas NF has funded research grants for NF studies including malignant peripheral nerve sheath tumor research and cardiovascular abnormalities in NF1.
• MD Anderson Cancer Centerclinical partnerStrategic or Co-development PartnerTexas NF has funded multiple grants for NF-related cancer research including MPNST methylation profiling and combination therapies.
• Children's Tumor Foundationcore partnershipStrategic or Co-development PartnerNational NF organization partner; collaborated on Drug Discovery Initiative award funding.
• GoodSearchminorGTM or Marketing PartnerSearch engine donation program where users can designate Texas NF Foundation to receive donations when searching the web.
• Tom ThumbminorGTM or Marketing PartnerGrocery store loyalty program allowing customers to link their Tom Thumb reward card to donate to Texas NF Foundation.
• KrogerminorGTM or Marketing PartnerGrocery store loyalty program allowing customers to link their Kroger card to donate to Texas NF Foundation.
• NF Midwestcore partnershipStrategic or Co-development PartnerRegional NF organization partner; collaborated on KOSELUGO FAQ document and federal advocacy.
• NF Northeastcore partnershipStrategic or Co-development PartnerRegional NF organization partner; collaborated on KOSELUGO FAQ document and federal advocacy.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Regional players

• NF Midwest: Regional NF nonprofit serving the U.S. Midwest, NF Collective co-founding member and KOSELUGO FAQ co-author with Texas NF. Operates the same regional-affiliate nonprofit model as Texas NF in a separate geography.
• NF Northeast: Regional NF nonprofit serving the U.S. Northeast, co-partner with Texas NF on NF Collective and KOSELUGO FAQ documents. Functionally identical operating model to Texas NF but operating in a different geographic territory, making it the closest peer for regional structure benchmarking.

Broad incumbents

• Muscular Dystrophy Association (MDA): Large national disease-specific nonprofit that operates a comparable model — patient support services, research grants, advocacy, and family programs — but for neuromuscular diseases. Serves as a benchmark for organizational scale, fundraising sophistication, and program portfolio depth.
• Children's Tumor Foundation: National NF-focused nonprofit with significantly larger program budget, Drug Discovery Initiative, and broad donor base. Direct NF Collective partner of Texas NF and the most established national NF advocacy, research, and patient-support organization.
• National Organization for Rare Disorders (NORD): Umbrella nonprofit supporting patients with rare diseases including NF. Provides advocacy, research funding, and patient assistance programs — overlapping with Texas NF's mission at the rare-disease umbrella level and representing a structural peer in the broader ecosystem.

Direct peers

• NF Team: NF-focused nonprofit also listed as a co-founding member of the NF Collective. Comparable regional/specialty NF organization with overlapping patient-support and advocacy programs.
• Littlest Tumor Foundation: NF-focused nonprofit co-partner in the NF Collective consortium. Operates a similar disease-specific support and research-funding model as Texas NF, with comparable scale and program offerings.
• Neurofibromatosis Network (NF Network): National NF advocacy organization whose Advocacy Program Texas NF participates in as a Leadership Council member. Operates federal Hill Visit days that have generated $600M+ for NF research — a near-direct functional peer in advocacy and patient support.

Market position

Strengths5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/TexasNF
• YouTubeyoutube.com/channel/UCU3AL3I2mttOY_Mpy8uPoCg
• Facebookfacebook.com/texasnf
• Instagraminstagram.com/txnff
• LinkedInlinkedin.com/company/texas-neurofibromatosis-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Texas Neurofibromatosis Foundation