- Fragile X-associated Disorders
- Treatment & Intervention
- Public Policy & Legislative Advocacy
- Support the NFXF
2012 was the most active year ever in the LINKS Support Network program, with everything from monthly Saturday gatherings for coffee to statewide awareness walks dotting the calendar. In addition to actively participating at the International Conference, many LINKS groups held local educational conferences for families and professionals in their communities. We also saw a lot of growth in the LINKS network, with eight new groups forming and two groups changing leadership. All this activity helped us reach out to more families across the U.S. than ever before.
So, what does all this mean for 2013? It means we are just getting started! Our LINKS network, which consists of parent volunteers, is already working on plans for social events, awareness events, educational seminars, and advocacy and fundraising activities, all of which will complement the support they provide to the families in their area.
2013 also looks to be the “Year of the Walk,” as Fragile X Awareness walks are planned for Washington state, Texas, Wisconsin, and Kansas, all happily piggybacking on the grandparent of them all: the 10th Annual “Walk for FX” taking place this year in central Illinois!
Education is a key component of our efforts, and our groups are working hard to help make it happen! Our groups in Alabama, Illinois, Connecticut, Seattle, St. Louis and the Heartland (South Dakota/Iowa) are already working hard on the details for their upcoming educational events.
It was great to see 20 LINKS groups represented at the 2012 NFXF Advocacy Day in Washington, DC last year. In 2013, our LINKS leaders are looking forward to increasing their numbers and joining hundreds of other family members and professionals as we return to our nation’s capital on March 5-6.
Social events have become fundamental to many of our LINKS groups, with monthly events like coffee (MN) or Mom’s Night Out (Eastern MA) that are well attended. Family events include picnics, bowling, pony rides, zoo visits, swim parties and more, all of them bringing our families together for wonderful outings.
We love to watch as our LINKS groups put the “FUN” back in FUNdraising! The creativity that goes into that fun brings a smile to everyone’s face as they enjoy pumpkin parades, comedy club nights, golf tournaments, and filling our tummies with good food from restaurant nights. (Papa John’s Pizza, Noodles and Applebee’s, to name a few!) This also reminds us that shopping is not only fun but beneficial when you shop for a cause!
With over 50 LINKS groups across the U.S. we encourage you to find one near you and get involved today! Check out our online map to find the closest LINKS group to you!