One of the most meaningful experiences for a Fragile X family is to meet another family and know you are not alone in this journey.
Families Were Bowled Over With Excitement & More!
On January 26, 2013, the Chicago CSN group held its Third Family Bowling Event—intentionally planned in between the football conference playoffs and the Superbowl! Organized by CSN leader Missy Zolecki, it brought together about 150 people from Indiana and Illinois, making this the largest family bowling event for the group to date. It had been advertised through the NFXF and social media.
With the help of imaginative family members and volunteers, the event offered more than mere bowling. “X” shaped cookies and t-shirts were available to purchase along with tickets for raffle prizes that included an iPad 2 and a jar full of M&M’s for the participant who could guess (closest to) the correct number in the jar!
One group of bowlers used the opportunity to celebrate a birthday, filling three lanes with family and friends! Others were on kept on their toes during the day as Matt let a few balls roll backward toward the crowd instead of down the lane toward the pins!
Everyone in attendance had a great time and said how much they look forward to coming back next year. One of the highlights for Missy was when a newly diagnosed family thanked her for the opportunity to meet other families.
At the National Fragile X Foundation, our mission is to serve you by connecting and supporting individuals and families through our family support network.
The enthusiastic commitment and tireless dedication of the network leaders to their groups is the reason we are known as the leading national community support network for Fragile X.
To honor their dedication and the collective success of the groups, I am thrilled to announce that today the LINKS groups are being renamed the Community Support Network (CSN).
I am proud to say the name Community Support Network was chosen because it more accurately reflects the work that our amazing leaders do.
Over the years, we have watched our 51 groups grow and their local communities embrace them. Because of the successful growth, we knew it was time to officially rebrand our support network to reflect the work that they do, in the communities, for the communities, with the communities.
If you are not a member of your local Community Support Network, now is the time to get involved! Join your local group and go on a “Night Out” that focuses on moms, dads or even siblings! Or have fun with new friends at a group picnics, bowling and trips to museums. The Community Support Network truly offers you a chance to meet others who understand the issues you’re facing.
Getting involved in the Community Support Network is also a wonderful way to give back to the Fragile X community. You’ll find out how much fun it is to fundraise with others through walks, flower sales and pumpkin parades. Many of our leaders provide the community with educational opportunities and even organize trips to National Fragile X Advocacy Day, which empowers their members.
There are more events than I can list! To say the groups are busy is almost an understatement as they create hundreds of events every year that support families, promote awareness and raise funds for Fragile X.
If you’d like to get involved, we have an interactive map so that you can find a Community Support Network in your area. There are many benefits to joining your local Network, but don’t take my word on it. There are tons of stories and personal accounts from others – just like you – who have benefited from joining their local Network.
Our CSN groups have always hosted social activities, including an evening out once or twice a year for families, but a new trend gaining popularity is a monthly night out. CSN groups in MA, RI, VA and MD all hosted evenings out for the adults.
Melissa Welin, co-leader of the CSN group:
I can’t overstate how good these nights have been for our group. It started as a periodic gathering whenever we could all find a common date, but we are all really busy so that became too cumbersome. We enjoyed it so much, though, that we decided to pick a firm monthly date and schedule the rest of our lives around it. Missing one of our nights out is a big disappointment—but it doesn’t happen often these days!
Some nights we shed tears, there are nights we are angry and need to vent, and there are nights when we just want to have a pretty cocktail and laugh at how absurd this can all be. We have gone beyond being part of a support group and become true friends. We have even done three FXMWA (FX Moms’ WEEKEND AWAY!) events over the last year!
Since we are all on Facebook we started a private “FXMNO” (Fragile X Mom’s Night Out) group that anyone who attends the events is invited to. We are also in touch by text message, which has added layers to our friendships. We always get excited when a new mom finds us (or we find her)! We invite anyone to join us, even moms from other states. (Maine and Colorado have attended so far.)
I really never imagined when we started these nights out that it would evolve this way. We started as women who had one thing in common: a child (or children) with FXS, and we’ve discovered so much more. I have found some of the best friends I’ve ever had in my life.
I am very excited to announce the Community Support Network name and I hope you are too! It is a milestone that we should all be very proud of.
If you have any questions or would like to learn more about your local Network, please send me an email. I always love to hear from you.
From your CSN Program Coordinator, Holly Usrey-Roos