Learning to Love Myself

Jun 18, 2018, Posted in NF Hero, NF1

By Cristina Kline

“Cyclopes, one-eyed monster, Hunchback of Notre dame!”

These are a few names I would hear throughout my school-age years. Kids can be mean, but being a kid myself at that time I didn’t understand. I played it tough. I pretended it didn’t bother me. I was strong. Those were just words but you know what? Words hurt. I’d cry in secret when nobody was watching. I wouldn’t tell my friends or family what I was going through and how it affected me. I had to be strong for them. I knew if I told my family they would suffer too. So, I kept it to myself. I kept it to myself for many years.

I was diagnosed with Neurofibromatosis Type 1 (NF1) when I was two years old. I am now 31 years old.

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Reflections on NF Forum from First-Time Participants

Jun 15, 2018, Posted in Community, Latest News, NF Forum, NF2, Schwannomatosis

In May 2018, the NF community gathered in Atlanta, GA for a long weekend of patient engagement training, leadership training, research updates, and patient and family support.  We asked two first-time attendees to reflect on their experience.

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House Appropriations Committee Advances $15 Million For NF Research

Jun 13, 2018, Posted in Advocacy, Latest News

Today, the U.S. House of Representatives Committee on Appropriations approved the FY 2019 Department of Defense Appropriations Bill, which includes $15 million in funding for Neurofibromatosis (NF) research. 

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NF Conference abstract submission deadline extended to June 25

Jun 13, 2018, Posted in NF Conference

The Joint Global Neurofibromoatosis Conference is a global event attracting more than 800 participants worldwide across a wide range of scientific disciplines, from research and clinical backgrounds, all focused on improving outcomes for patients with neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) and schwannomatosis

The call for abstracts has been extended to June 25. Click here for more information. 

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