New Study On Cftd And Support Groups

Hi everyone,
I have already written a story on this site about my three year old son who has CFTD but decided to post another one to tell everyone about another support group on facebook called "Support for families and friends of people with congenital myopathy". I find this a more effective way to communicate with others with CFTD because I am on facebook more often than I am on experience project. I would encourage everyone to join the group to gain knowledge and help others who are struggling with the disorder.
There is also a doctor (Dr.Beggs) at Boston Children's Hospital that is trying to find people with CFTD to do a study and hopefully find some answers about the disorder. All participation will help and it is very simple. All you need to do is contact them and they will send you information about the study and then have a blood sample drawn at a local clinic and they will send the blood to Dr. Beggs. They don't need a lot of people but the more that participate the more information they will find. So PLEASE everyone who is interested either reply to this post, join the facebook group, or email me at It would be a good idea to put "CFTD" as the subject because it will probably go to my junk mail.
In addition I would LOVE to talk to anyone who has time to talk to me about the disorder. I am looking for any kind of knowledge that I can get. There is so little information available that I would love any input anyone has. So if anyone would like to email me or call me just to talk feel free :)
Thanks so much! I hope to see everyone on facebook and I hope you will call Dr. Beggs' office or email me about contact information! :)
Have a good day guys!

jannacookie jannacookie
Nov 29, 2012