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NF Legacy Spotlight: Extraordinary Spirit

By October 16, 2023December 27th, 2023Awareness, Newsletter

The Children's Tumor Foundation (CTF) NF Legacy Society consists of individuals who have ensured the future of NF research by including the Children’s Tumor Foundation in their wills and estate plans. Longtime donor and NF Legacy Society member Carolyn Meyer-Tolliver spoke to us about the reason she gives and the importance of leaving a legacy.

CTF: How has NF impacted you and your family?

Carolyn Meyer-Tolliver: My son Jeff was diagnosed with NF1 in 1982 at eight years of age because of his café au lait spots. He had no other symptoms until he reached his early 20s. While a student at the University of Florida, he developed severe pain in his left leg. His doctor at the University found a large tumor on the femoral nerve in his left leg. Removal of the tumor confirmed a diagnosis of NF1; however, the tumor was benign, and Jeff was able to go back to the University and finish his BA and his MA degrees. At 30 years of age, he was living in Maryland, and his doctors at Johns Hopkins University found another tumor in his left leg, which turned out to be an MPNST – a malignant peripheral nerve sheath tumor.

I had been donating to the Children’s Tumor Foundation every year since his diagnosis. Jeff had been working with CTF, telling people about the disease and helping raise funds for NF research by participating in various events. When the diagnosis became MPNST, I increased my donations, and Jeff worked tirelessly fundraising for CTF. Jeff had multiple surgeries and constant pain until his death twelve years ago at age 35. As my finances increased over the years, I have routinely increased my yearly donations and have talked to people about NF whenever the opportunity arises.

CTF: Why do you think leaving a legacy gift is important?

Carolyn Meyer-Tolliver: When Jeff was diagnosed, CTF was then called the National Neurofibromatosis Foundation, or NNFF, and it was only four years old. Very few people knew about the disease. When Jeff’s doctor told me he suspected that Jeff had NF, he said to me that Jeff had Proteus Syndrome, which was more widely known as the elephant man’s disease and is not NF. Over the years, CTF has increased the knowledge of NF tremendously, particularly in the past fifteen years. But the treatments for NF are still in the development stage, and there is nothing yet that seems to work for MPNSTs. There has been significant improvement over the past 40 years in our knowledge about what NF is and an encouraging start to finding treatments, but there is a long way to go. I hope to be able to increase my monthly donations as well as increase my legacy donation.

CTF: What is your hope for the future of CTF?

Carolyn Meyer-Tolliver: I hope that CTF can continue the growth that it is experiencing now. The research into the causes of NF and the development of treatments is vital. Making NF visible and the increase of NF organizations around the world is critical. It is also essential that the general public learns about NF and understands the needs of people with the disease. There are so many variables in the symptoms of NF, from nothing visible to extreme disfigurement. It might be easier to get support for research if everyone with NF developed external signs, but those like my son with no visible symptoms can also suffer severe pain and die at an early age.

By making a special legacy gift to the Children’s Tumor Foundation, you will play an essential role in ensuring our work continues. Your planned gift is an investment in the organization’s longterm future, ensuring that the Children’s Tumor Foundation will continue to lead the way in the fight to end NF.

To learn more about leaving a legacy and including CTF in your will or estate plan, please contact the Foundation at, or call us directly at 1-800-323-7938.