On September 25 to 27, 58 Community Support Network (CSN) leaders visited St. Louis, Missouri, for the National Fragile X Foundation’s second biennial CSN Leadership Summit.

The CSN is the national volunteer program of the NFXF, comprised of groups typically organized and run by parent volunteers. The CSN provides emotional and educational support to families and individuals living with Fragile X. CSN groups organize events that offer support and build awareness for Fragile X in their local communities.

At the summit, CSN group leaders attended sessions to enhance their leadership skills and collaborate to better serve their local families and community members.

CSN Dinner, Special Recognition and Awards

To kick off the summit, on Friday evening we began with an awards and recognition dinner for the leaders, joined by the NFXF Board of Directors and Team.

I hosted the event, while NFXF CEO Tony Ferlenda and NFXF Board president Jennifer Silverton addressed everyone with a warm welcome and talked about direction and progress of the NFXF.

Every group received a special recognition for the hard work they’ve put in throughout the year. Along with special recognition, four CSN Awards were presented to: Central Arkansas Fragile X, Sibling & Self-Advocate Community Support, Western Massachusetts Fragile X and Amy Zeleznik. Learn more about their awards here!

Making Stronger CSN Leaders… For You!

On Saturday, we got down to business! The morning began with breakout sessions focus on fundraising and development.

NFXF Fundraising Events Manager Kimberly Powell led the session for more experienced fundraisers, which laid the groundwork for discussion and collaboration amongst the CSN leaders, providing opportunities for growth. In the other breakout session, which I led, leaders who were new to fundraising blossomed with ideas to develop relationships and raise funds in their communities.

Even after years of awareness activities, all of our groups still struggle in their local communities with the same question: “Fragile what?” To help answer that very question and create more understanding communities for everyone, we equipped the CSN leaders with the tools to return to their communities and engage a larger population through fundraising, awareness and education.

During a Southwestern-themed lunch, Fragile X Alliance of Texas led an art activity that will be part of the 2016 NFXF International Conference in San Antonio. It was a wonderful opportunity to get everyone pumped for the upcoming conference and provide a way to be involved.

In the afternoon, the CSN groups were divided into seven regions, each led by their regional leader, to discuss their plans and goals for next year, put together regional collaborations and receive one-on-one mentorship.

The energy and excitement was incredible! You can never go wrong when you put this group of leaders together. The feedback and ideas they shared from personal experience is significant and makes a great impact. They talked about how to engage families and planned to bring what they learned back to their own communities.

Would You Do #AnythingForFragileX? How About a Pie in the Face?

We love to encourage our leaders to get creative and think outside the box! So, as a fun idea, we held an auction to throw whipped cream pie in the face of NFXF Team member Jeffrey Cohen. Missy Zolecki, Central Region Leader and co-leader of the Greater Chicago group won the auction but it didn’t end there! Northwest Regional Leader Michelle O’Dell offered to add more money if Jeffrey would let her write “Go Seahawks” on the plastic cape covering him. Then, they challenged all of our CSN leaders in attendance to add more, leading up $1200 for a pie in Jeff’s face!

It continued the next morning: the regional leaders, Kimberly Powell and I presented the challenge to the NFXF Board of directors who collaboratively raised $3300 for the opportunity to pie NFXF CEO Tony Ferlenda’s face.

This simple activity was not only a lot of fun (and supported by two great team members who would do #AnythingForFragileX) but a great way to show that thinking outside of the box can lead to big results!

Off to the Mouse Races!

Saturday evening wrapped up in a big way with group leaders, NFXF team members and the NFXF Board of Directors attending the 10th Annual Mouse Races hosted by the Fragile X Resource Center of Missouri. This outstanding event was a great way to end our time together with delightful example of more outside-the-box fundraising. The races are which is exactly like it sounds: real, live mice racing each other to the finish line where a treat awaits! You have to be there to really get it, but it’s so fun and sells out every year! The evening included a live and silent auction, raffles, great food and many other mouse- related activities!

Thank Yous

The CSN Leadership Summit is a significant opportunity for the leaders in our community to come together and we could not do it without the support of our sponsors: Neuren Pharmaceuticals, The Ahmed Family Foundation, Greater Chicago Fragile X, New Jersey Fragile X Community Support, Fragile X Society of Connecticut, Kansas Fragile X, The Fragile X Association of Michigan and Central Illinois Fragile X.

A special thanks to our host group the Fragile X Resource Center of Missouri who welcomed us to St. Louis, to the Mouse Races and as always went above and beyond to make this great event happen. We’d like to acknowledge Diane Southard, Linda Kuhn, Michelle Delany and Sara Hamilton for their extra efforts in getting everything ready for the grand arrival of everyone on Friday!

And of course, we’d like to thank our CSN leaders – and their regional leaders – because they are our eyes, ears and hands. They truly help the Fragile X community in every way they can.


Holly Usrey-RoosHolly Usrey-Roos
started as the LINKS program assistant for the National Fragile X Foundation in 2010 and became the LINKS program coordinator in the fall of 2012. In early 2014 the LINKS Support Network was rebranded as the Community Support Network (CSN). Holly has two children, a son and a daughter, with Fragile X syndrome. In 2006 she founded the Central Illinois Fragile X CSN group to bring families together and raise awareness about Fragile X in the region. She currently acts 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.” The last of these was made into a podcast for the NFXF.