Texas Neurofibromatosis Foundation

06/23/2026

Thank you to all our supporters, advocates, those who shared their personal stories, and all who sent emails and made phone calls to their Congressional Representatives.... because of you we are one step closer to securing $25 Million for NF Research!

📢 Encouraging news for the NF community!

The House Appropriations Committee has included $25 million for the Congressionally Directed Medical Research Program (CDMRP) Neurofibromatosis Research Program in its Fiscal Year 2027 Defense spending bill.

While this funding is not yet final, it marks an important first step and reflects the power of advocacy across the NF community. This progress would not be possible without the voices of patients, families, advocates, researchers, clinicians, and supporters who continue to champion the need for NF research.

Thank you to everyone who has helped demonstrate the impact that sustained federal investment can have on advancing scientific discoveries and bringing new treatments closer to reality.

We will continue to keep you updated as the FY27 funding process moves through Congress.

06/21/2026

Wishing all dads and father figures a very Happy Father's Day from the Texas NF Foundation!

06/20/2026

There are two opportunities for adults with NF1 to participate in research studies conducted by Florida State University College of Medicine.

Participants must have a diagnosis of NF1, be 40 years of age or older, be able to read and speak English, and reside in the United States. See details and flyers below for more information.

NF1 Cognitive Aging Study
Florida State University College of Medicine is conducting a study to investigate cognitive patterns and predictors among middle-aged and older adults with NF1. Participation includes a virtual Zoom interview (1/2 hour) and online survey (1 hour). Participants will be paid $40. If interested, please complete this brief screening survey https://redcap.link/edpbo89j.

MindTrack-NF1 Study
Florida State University College of Medicine is conducting a study to investigate daily cognitive patterns and factors that influence thinking and memory among middle-aged and older adults with NF1. Participants must have access to a smartphone. Participation includes a virtual Zoom interview (1/2 hour), an online survey (1 hour), and a 10-day period of daily tracking using a Fitbit (provided by the study team) along with 5 brief smartphone surveys per day (about 5 minutes each). Participants may receive up to $260 in compensation. If interested, please complete this brief screening survey https://redcap.link/MindTrack-NF1.

06/17/2026

Calling all parents, teenagers and young adults! We still have space at our dinner presentation in San Antonio. You don't want to miss this important conversation!

RSVP using this link:
https://forms.gle/Hx7J2rTFmMFuqJqKA

It's never too early to educate yourself about the transition from pediatric care to adult care. Whether that transition is years away or right around the corner, being prepared can make all the difference.

Join us for a live dinner presentation in San Antonio, “Transitioning to Early Adulthood”, hosted by Texas NF and Alexion on June 25 at 6:30pm.

Space is limited, scan the QR code or use the link below to register.

https://docs.google.com/forms/d/e/1FAIpQLSclYIdg1xkkDuOWJuCnbX5wyql2-wiNxAnV82K5a8-Blu3oOQ/viewform

06/15/2026

Join the NF Collective for a virtual presentation on June 24 at 6pm CT, "How to Advocate for Yourself." Learn how to effectively communicate and advocate for yourself with healthcare providers and in your community.

Scan the QR code or use the link below to register:
https://bit.ly/NFcollectivewebinar

06/12/2026

It's never too early to educate yourself about the transition from pediatric care to adult care. Whether that transition is years away or right around the corner, being prepared can make all the difference.

Join us for a live dinner presentation in San Antonio, “Transitioning to Early Adulthood”, hosted by Texas NF and Alexion on June 25 at 6:30pm.

Space is limited, scan the QR code or use the link below to register.

https://docs.google.com/forms/d/e/1FAIpQLSclYIdg1xkkDuOWJuCnbX5wyql2-wiNxAnV82K5a8-Blu3oOQ/viewform

06/03/2026

🎉Registration is NOW OPEN! 🎉

NF Family Camp is back, and we can't wait to see our amazing NF families for a weekend of fun, friendship, and community.

Register today and join us for an unforgettable experience!

September 11-13, 2026. Camp for All, Burton, TX

Visit our website to register:
https://www.texasnf.org/events/texas-nf-family-camp

The deadline to register is July 20, 2026!

Join us for the Texas NF Family Camp, September 11-13, 2026! Texas NF has been offering an NF Family Camp to our patients and their families for over thirty years.

06/02/2026

The Texas NF Foundation is pleased to announce the Doris Kraft Scholarship Fund.
Doris Kraft was the first Executive Director of the Texas NF foundation and the dirivng force behind establishing the organization, which has touched countless lives through its dedication to patient support and fundraising for NF research.
The deadline to apply is July 1, 2026.

Click the link below for more details and the application
https://tinyurl.com/DorisKraftScholarship

06/02/2026

A huge thank you to all the families who joined us at the San Antonio Missions baseball game on Saturday night! We had a wonderful evening cheering on the Missions to a victory, enjoying an amazing fireworks show, and celebrating a Spurs win as well—what a great night for San Antonio sports!

We loved spending time together and appreciate everyone who came out to make the event so special. Thank you for being part of our community and creating such great memories with us!

06/01/2026

The John D. Wagner and Elisabeth R. Wagner Scholarship is a scholarship awarded each school year for people afflicted with neurofibromatosis who are seeking higher education. We are now taking applications, the deadline to apply is July 10, 2026.

Apply here: https://www.texasnf.org/wagner-scholarship-fund