Are you interested in joining our 7q11.23 Duplication Family Support Group?
If so, you may contact us directly at:
By being a member of our support group, you will have access to other families who've been influenced by the duplication. You will be able to share ideas, concerns, and ask questions of our group. As of April 2011, 60 plus families have registered with our organization. You will also receive semi-annual newsletters containing the latest information from families and professionals who assist 7q dupe individuals. Membership to the group is free.
Our hope for your family is that you are able to communicate with others to learn as much as you can about William Beuren Syndrome Duplication (7q11.23 Duplication). Most of the time, we have the same questions, feelings and stories to share. We want to know what the upcoming years may include. We want to know how to help our family members with speech, education, anxiety, behavior, social skills, emotion regulation, sensory processing, and so much more. However, because the duplication is so new and still quite rare, you may be unsure of where to find these answers. At times this journey can be frustrating.
As we continue to learn about the children and adults with the duplication, many of those missing pieces of information have been found. Over the past few years, as our 7q Dupe Group family has grown, we have learned much from each other through the sharing of our experiences and through participating in research Our group clearly identifies with your struggles and challenges. We truly know how you feel.
Once again, our 7q11.23 Duplication families personally thank you for contacting us. We feel so fortunate to have the opportunity to get to know you and your family. Through this journey, we continue to make new friends with individuals from all over the world who actually understand what daily life with the duplication entails. There are so many great things we can learn from our 7q11.23 duplication family member. With each new member of our group, our lives become more enriched and we become even stronger.
We look forward to hearing from you.
