A Letter From NF Midwest Co-Founder

Posted By NF Midwest | On December 31st, 2025

Because of Her, It Started. Because of You, It Continues.

Dear Friend of NF Midwest,

My journey started in 1976 with my son, Peter. His symptoms were confusing, and information was almost impossible to find. One doctor finally recognized what was then called von Recklinghausen disease, and that moment sent me searching for answers. My pediatrician had to look in his medical book and found one paragraph. That was it. That was the extent of the information I had.

The internet had not been born yet. There were no online communities, no searchable clinics, and no access to clinical trials or research. Parents like me needed support, and we had to create it ourselves.

During those early years, many people believed the man portrayed in the play and film The Elephant Man had neurofibromatosis. I remember looking at my sweet boy and feeling fear about how life might unfold for him. I didn’t know what he would face as he grew up. That fear pushed me to learn, to ask questions, and to reach out to other families who were just as lost.

My family and I visited the National Institutes of Health, where a doctor encouraged me to build a chapter of the National Neurofibromatosis Foundation that could help people affected by NF and families like mine. I began gathering the names of families who were impacted by NF. I mailed newsletters from my kitchen table. With every name I wrote down, I felt a little less alone. Parents across Illinois were feeling the same isolation, and together we were ready to take action.

On December 31, 1981, we signed the incorporation papers for what became the Illinois Neurofibromatosis Foundation. We chose New Year’s Eve because we believed the coming year held promise. That moment planted the first seeds of what would grow into NF Midwest! I never imagined that the support I once searched for in silence would grow into the community we have today.

Because of you, a new parent finds answers in minutes, not years.

As we look toward 2026, our direction is clear. Earlier answers. Stronger care. More connections for every family. Progress in research.

Gratefully yours,

Gail Mavrogenes
Co-Founder and Board Director

PS: Your gift brings families the support I once wished for. Please use our safe and secure website to make your tax-deductible donation, and do not miss the chance to double your donation by midnight!