What do you do if there is no LINKS group near you?

I’m going to assume that every single one of you has clicked on the map here and found a LINKS group to connect with. If the closest LINKS group is in another state, that’s OK! You at least want to get on their e-mail list even if you can’t get to the area for events regularly. What you might discover is that there are other people from your area who are also participating in that group because there isn’t anything else closer. You might just find someone who lives right around the corner from you. **WAVING MADLY TO MY NEAREST FX PEEPS**

I can tell you this though, based on my experience and what I’ve heard from other parents, if you go to just one event…you’ll be hooked. It is the most amazing experience to be in a room with people who know, from the top of their heads right down to their toes, what it’s like. To be able to look someone in the eye and say the things you can’t say to anyone else because they won’t get it is such a huge relief.

Now, let’s say you’re in the Northeast Kingdom in VT and your nearest group is in southern NH or western MA. You may feel like you’re on the moon. It’s just too far to travel for a day trip, right? You still don’t have to be on your own though. Through the power of the interwebs the Fragile X community is still making connections and still reaching out to families and providing support.

I’m a blogger so I’m partial to my fellow bloggers. I love the glimpses I get into the daily lives of families who are walking the same long road as I. If you have a blog that’s Fragile X related and are not yet a member consider joining the Fragile X Webring. If you don’t have a blog, first, WHY NOT? And, second, check it out anyway and see all the cool blogs other families are sharing.

My second favorite way of connecting with other families is FACEBOOK! I’m a wee bit obsessed with the Facebook if the truth be told. There is a Fragile X group on Facebook. There are a bunch of LINKS groups on Facebook. Most importantly, though, there are TON of awesomely funny people on Facebook. It’s not all FX all the time but they are the first people to shout out “Me too!” when Fragile X pops up to slap you in the head or tickle your funny bone depending on the day. I use pseudonyms here to preserve Monkey’s privacy as much as possible but I’m out in the open on Facebook and love to make new FB friends. If you’re on Facebook and want to be friends drop me a comment and I’ll respond by e-mail. Who knows, we may already be friends! **WAVING MADLY TO MY FACEBOOK FX PEEPS**

Another way I connect with families is the FRAXA’s listserve. It is an amazing resource for when you have questions. I save a TON of messages from the listserve, so much useful information gets passed along through there. I get ideas on therapy, reading programs, math programs, sensory diets, you name it. It is awesome. Also, since both Katie Clapp and Dr. Mike are active members you get some neat updates on research and FRAXA fundraising efforts. Join here.

One last way is the My Fragile X Community supported by the National Fragile X Association. I’ll admit that I’m not active there but I did add my info and I do use it at times. I think the very coolest part is that if you have, say, an adult child with Fragile X and you want to try to find other adults with Fragile X near you…there is a very cool search function that will allow you to search by age range, location, etc. I encourage you to at least enter your info, you never know who will find you!

If you have other ways of connecting that I’ve missed, leave a comment! Heck, leave a comment anyway because I kinda feel like I’m talking to myself these days.  Sheesh.

4 thoughts on “What do you do if there is no LINKS group near you?

  • October 22, 2010 at 5:13 pm

    I love it when you talk to yourself… Geez!
    Love all the info! You are such a superstar!! 🙂

  • October 22, 2010 at 8:01 pm

    See, normal people get nervous when they see me talking to myself 😛

  • October 23, 2010 at 8:50 am

    Good info! There is a local group in my area but it’s not very active. I intend to change that. 😉

  • October 23, 2010 at 10:13 am

    Good for you Bonnie! Infusion of new people, new ideas and enthusiasm are really key to keeping a group running!


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