Klippel-Feil Syndrome Alliance Celebrates Two Years in Support of KFS Community

June 16, 2014

Note: This is an update to a story we released two years ago. This is update is provided by Sharon Rose, Director of Communications for the KFSA.

Two years ago this week, I excitedly opened a Facebook page for the Klippel-Feil Syndrome Alliance.

I had been ready for a while. After over two years of connecting with others who are affected by Klippel-Feil Syndrome on MD Junction, a support group online, I noticed that Facebook was really where people we’re looking for support.

I felt the pull.

I had been diagnosed only 3.5 years prior, at age 38. As a child and teen I’d had surgeries, but we did not know KFS was the culprit. Lisa Raman taught me much about KFS. As I searched, I saw what was lacking for KFS patients and families. We knew, there MUST be more made available. We had our initial meetings, began The Klippel-Feil Syndrome Alliance in the spring, and the time had come to find patients and families affected by KFS!

They sure showed up, from far and wide! We have people on our page From South Africa, India, Brazil, Poland, Germany, the UK, and Dubai to name a few. For the first time, we had a global touchstone. A central place to find common ground on so many topics, as patients, parents, caregivers, family & friends! We’ve grown as a community & organization each week. We have shared the tears and the victories. We have bonded. People constantly remark how they always felt alone and now they know they are not.

At times, I have struggled with this role. I never dreamed that I would be re-purposed to spend my time in this way. I honestly never wanted this. I had a flourishing career and active life. I had other plans. There are times I can begin to think it doesn’t matter, it’s a silly thing.

However, two years later, I am so honored to be a vessel for Klippel-Feil Syndrome patients & families. I am thankful to share slice of who our families and patients are, and hear how they relentlessly defy KFS. This cause has become a part of who I am now. I am still learning to embrace it. However, I am invested in offering what I can to help those with KFS. I am so thankful to all of those who step in and help this cause, who go beyond the call. We never give up. You matter. Your children matter. You have skills that are much appreciated. We may not have all of the answers, but we are after the answers together. Here’s to continued growth and development of the KFSA. Let’s make the unknown KNOWN. Alliance starts with All. We are key.

Who We Are – Celebrating 2 Years! from Sharon Rose Nissley on Vimeo.

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