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Join the NF Legacy Society

By August 3, 2023February 28th, 2024Ways to Give

A letter from NF Legacy Society member Susan Salpeter:

Dear CTF friends,

I am so impressed with the work CTF is doing to improve the lives of those living with this condition. I was diagnosed with NF almost 60 years ago when there was limited knowledge and no treatment options.

Today, the Foundation has made a $1 million investment in NFlection Therapeutics’ Phase 2b clinical trial of NFX-179, a topical (on the skin) MEK inhibitor for patients living with cutaneous neurofibromas, a trial in which I  am proud to have participated. They are also funding a $1.8 million research collaboration between the NIH and Washington University studying a liquid biopsy for the early detection of MPNST, and investing more than $3 million in gene therapy research for NF1 and NF2-related schwannomatosis (NF2).

I am personally so proud to be a part of these efforts. To continue to help change the landscape of NF research, I have included the Children’s Tumor Foundation in my estate plans. 

I hope you will join me by doing the same. We owe it to those living with NF to support CTF’s vision for treatments and, ultimately, cures.

CTF’s NF Legacy Society brochure (available in English and Spanishprovides more information about the NF Legacy Society and how to include CTF in your estate plans. The Foundation has made it so easy to leave a legacy through their partnership with FreeWill, an online service that helps you write a valid will in just 20 minutes! So, what are you waiting for?  Visit

The Foundation is here to help you. If you have any questions about the NF Legacy Society, please reach out to Kim Robinson at or (646)738-8587.

Thank you for your consideration. Together we can and will end NF!


Susan Salpeter

CLICK HERE to download an informational flyer from FreeWill 

Download the NF Legacy Society brochure below.