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Reflections on NF Forum from First-Time Participants

By June 15, 2018December 5th, 2023Awareness, NF Summit, NF2-SWN, SWN

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.


Attending my first NF Forum was an experience that I am incredibly grateful to have had the opportunity to be a part of. It meant so much to get the chance to meet the most dedicated, driven, brilliant & passionate individuals, who are all working tirelessly to better my son’s future, along with so many others touched by NF. Although no story was exactly the same, we were all able to relate to each other in a way that no one else truly can.

What I was hoping to get out of the Forum was a chance to meet other people in the NF community & gain more knowledge about the latest medical advancements for NF. What I was not expecting was to immediately feel so welcomed by everyone. I also looked forward to the expert guest speakers, but did not expect to get the chance to speak with them personally, which was really great.

Everything about my first Forum experience was incredible, but the most meaningful thing I took away would be the connections & friendships made. Never have I been a part of such a community that is so quick to welcome you with no judgement, who genuinely care, & just “get it”. The motivation & drive that goes into this cause from everyone involved is truly aw-inspiring!

Where this takes me in my NF journey is to remain motivated & driven & to never give up hope, because promising things are happening with NF research. It is my duty as a mother to a beautiful, bright, brave little boy with NF2 to do my part in helping any way I can, by raising more awareness & funds for NF research. The relentless work of CTF gives me hope that we will make a difference for not only my son, but for the whole NF community.

-HANNAH DUBY, son has NF2


The NF Forum in Atlanta this past May for patients and family was a wonderful event. It was the first forum I was able to attend since I was diagnosed with Schwannomatosis in early 2015. I’m not active on social media and I was looking forward to this event to meet the NF community. The agenda and venue was a great way to meet others facing similar and diverse challenges from NF. Opportunities for conversation were plentiful, from breakfast to late into the evening. The agenda was packed with engaging speakers and educational topics. With over 200 patients, care givers, physicians, researchers and other NF advocates in attendance, there was someone to learn from and someone to listen throughout the weekend. I would challenge others to participate in local NF group in the coming months and plan on making the next CTF national forum event.  Not only will you learn more about NF, but you’ll have a chance to educate others and become a better NF advocate outside of the NF community for all of us.

-DALE BERG, lives with Schwannomatosis



Click here to view photos from the 2018 NF Forum.

Click here for the NF Forum website and more information.