Facebook, Twitter, email, blogs, conferences, seminars, group barbecues and long phone conversations. What do these have to do with each other and with Fragile X? They are all places where one can go, or tools that one can use, to remind oneself that Fragile X has visited many and that many are there to provide guidance based on real world experience. If you’ve yet to take advantage of the chance to converse with others, and are waiting for the right time to reach out, now is that time. Perhaps you have something you’d really like to ask about. Maybe you have an important insight to share. More likely, both apply. It doesn’t matter which it is. What matters is that you are connected. Whether you choose to do your connecting online or in person isn’t the issue. It’s the decision to connect that makes a difference. Many thousands of you are already regularly communicating with each other but thousands of you are not. Connections will become more important, not less, as new and improved treatments become available. (Something that everyone can continue to be optimistic about as trials of new drugs continue to move forward.) Shared experience is – and will continue to be – essential.
There is a fabric that binds Fragile X families together and families to clinicians and scientists. This newsletter is part of that fabric and the fact that you are reading this suggests to me that you already part of the Fragile X network – or ready to be. Make the decision to reach out. Being connected will help you and it will help others.
National Fragile X Foundation