- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
Our LINKS 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. In February, LINKS groups in MA, RI, VA and MD all hosted evenings out for the adults.
Melissa Welin, co-leader of the Fragile X LINKS group of Eastern MA, has the following to say about FXMNO:
“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” 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.”
“We meet every month, even if it’s just two of us. I always make reservations—even if the place doesn’t normally take reservations. I found that once I explained what it is for, they were great in accommodating us. You might also check with other local business to see if they would donate funds for appetizers. Jonathan’s Electric donated appetizers for the table for our February MNO, which we really enjoyed. Make it fun; we have enough ‘serious’ in our life, and sometimes we need to just let our hair down and relax!”
In Rhode Island, LINKS Leader Leslie Bobrowski brings together all of the “grown-ups” for a “Grown Ups Night Out,” although the original date in February was changed due to bad weather. The group reschedule for early march and we look forward to their report on how it went.
For more information on the activities of the LINKS group nearest to you, please check out our Events page.
Fragile X of Minnesota
National Fragile X Foundation’s Advocacy Day
35 LINKS leaders representing 24 groups will be part of almost 200 advocates representing 34 states in Washington, DC
Kansas Fragile X LINKS Group
2nd Annual conference with Mouse, Tracy and Cindi Rogers
Fragile X LINKS Group of Eastern Massachusetts
Dads’ Night Out
Fragile X LINKS of Northern GA
Meet and Greet