DISCLAIMER: The discussions among one another is not replacement for seeking medical advice. Site is intended to education and provide links and information and connections.
After making connections people almost want to cry to find others that understand every element of what they go through, from falls, to difficulties, and dealing with many social interactions. I believe this group allows for interactions, education, and resources that is much needed for this rare disease.
Please check us out for more private Facebook discussions. It is a private closed group so just sent a message and we will accept.
This page is dedicated to my strong beautiful daughter, Kennedy.
With a closed Facebook group of over 185 we have an international group from all over. So if you are looking for something emotional, social, financial or a place to vent or share experiences you found it.
OUR BETHLEM FAMILY CONNECTIONS
With the Facebook group and opportunities here to make connections and exchange email and phone numbers wonderful connections are made.