LINKS Leaders 2013 Summit

Individual commitment to a group effort—that is what makes a team work, a company work, a civilization work.

-- Vince Lombardi

The backs of sixty-three T-shirts bore this quote at the NFXF LINKS Leadership Summit in St. Louis on October 25 and 26 and it is that individual commitment to the foundation’s mission that makes our LINKS{{1}} Support Network stand out from other volunteer groups.

girlsOur  leaders are all volunteers with one common bond: Fragile X. They are parents, grandparents, and friends who dedicate themselves to helping others in their communities. They have made a commitment to provide support and advocacy, host a variety of educational and social events, fundraise, and build partnerships with their local —all in service to their local families.

The leaders were welcomed to the summit in true celebrity style, thanks to the help of several LINKS Groups.  provided a stunning NFXF backdrop for pictures taking as the evening began on Friday and  completed the grand entry with a stunning silver balloon arch leading to a room filled with balloons and cookies all showing NFXF colors. Everyone got acquainted during the planned social activities and dinner and enjoyed a time to relax before getting down to business next morning.

AppalachiansSaturday was an empowering day of training, team building and excitement. Everyone contributed ideas, with an enthusiasm that helped to further strengthen the unity and direction of the LINKS Support Network’s future.

For the past year, members of the LINKS Strategic Planning Team have worked under the guidance of the LINKS Advisory Committee and the to provide a clear vision for the future of the NFXF LINKS Network Program and provide greater outreach to local families.

We were thrilled to have NFXF Board President Brad Whitus, NFXF Interim Executive Director Jeffrey Cohen and NFXF Associate Director Linda Sorensen in person to speak about the importance of the LINKS Network to the NFXF’s mission and to show their support of the LINKS leaders.

The goals of our LINKS leaders will remain the same. They will continue to focus on support, education and awareness, advocacy, fundraising and partnerships with clinics.

gwen n loriWe also have set a clear direction to build a stronger NFXF LINKS Network. The summit provided leaders with toolkits as resources for future events and regions have been formed to better reach underserved populations, and also to provide more LINKS team activities.

Leaders were grouped regionally and worked together creating action plans for both the local and regional levels. In true LINKS spirit, a competition between regions emerged to see who could do the most. It is a competition that will only result in Fragile X families “winning” across the entire USA!

With the tremendous support of the NFXF, the LINKS Network will smoothly transition to the next level, setting a precedent for other disability organizations of heightened family support and leadership. Our LINKS groups have always served as the connection between the NFXF and local families and while we have seen spectacular accomplishments before, we know after the summit we have only just started to scratch the surface. The future is going to be amazing!

Holly Usrey-RoosHolly Usrey-Roos
is the LINKS program coordinator has been working with the LINKS Network for the National Fragile X Foundation since 2010. She has two children, a son, Parker and a daughter, Allison, with Fragile X syndrome. In 2006 she founded , where she currently serves as co-leader of the group. Holly has been a speaker at several conferences, including the NFXF’s international conferences, on topics such as “Working with Your School,” “Media Relations,” “Fundraising,” and “How to Talk to Your Child’s Classmates About Fragile X.”

[[1]]LINKS stands for “Linking Individuals in Nationally in Knowledge and Support”[[1]]