Ken Linkous attended his first NF Forum in Washington,D.C., last year. As we gear up for this year’s gathering in Scottsdale, AZ, we asked Ken to look back on his experience and share his thoughts.
The smiles. The warmth. The loving families. The NF Heroes! The hope-filled eyes of everyone in attendance! This is what I remember from my first-ever NF Forum in Washington D.C. in 2014. I was unsure what to expect when I arrived. I came to learn about NF research and the strides made to find a cure. What I came away with was a sense of family – of a team of volunteers, of caring individuals, of medical and research professionals and, most importantly, of parents, brothers, sisters, aunts, uncles, grandparents, and friends – who are united to find a cure to end NF!
The Forum is not a pity party. It is an event that inspires all who attend to be confident in their fight and to know they are not alone! The presentations, the breakout sessions, the research updates … all were instrumental in opening my eyes to the challenges faced by CTF in fighting the good fight. I was extremely moved by D. Anthony Evans as he shared his struggle with cancer and NF. The man is a beast who refuses to allow his physical challenges to dictate who he is and what he can accomplish! The most stimulating speaker, for me, was that year’s CTF Ambassador, Bailey Gribben. Surrender is not in this young man’s vocabulary or in his nature. I had the tremendous fortune of introducing my son, Connor, to Bailey at the 2015 Rolex 24 in Daytona Beach (Racing 4 Research). He is one incredible human being and a true inspiration to all who fight to find a cure!
The Forum introduced me to many new and dear friends, with whom I have reunited at other CTF events, such as the NF Walk Summit, the Jacksonville NF Walk and, most recently, the Saint Petersburg Cupid’s Undie Run. The compassion and motivation that resonates throughout the Forum during each speech, in each presentation, and right through each moment ignites a passion in all attendees to return home to campaign for NF education and awareness and to fervently fundraise in order to make a difference and rid the world of Neurofibromatosis.
I cannot wait to reunite with the dear friends, now colleagues and fellow champions in the fight to end NF, who I was blessed to meet in Washington D.C. last year. I am very much looking forward to feeding off of their energy to make 2015 the year we find a cure!
Ken Linkous is the Jacksonville Chapter Representative and Jacksonville NF Walk Organizer.
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