Dr. Francomano from the NIH called me this morning

[Guest guest]

I just wanted to let you know that Dr. Francomano, of the NIH in land, returned my call of yesterday very early this morning. She said that she would like for both me and (oldest son) to come to Baltimore in early-mid January to participate in this study of genetic connective tissue disorders.

I thought the study was only for adults, but I suppose because he is 17, he is considered one for purposes of this study. I told Dr. Francomano about both and I having some autonomic nervous system dysfunction manifestion (neurocardiogenic syncope, narcolepsy, IBS), and how that seems linked to EDS. She agreed, and said, "We hope to find out how and why." I also told her that I am more Hypermobile than , but I think it is because of age. The more you stretch a rubber band, the "looser" it gets from use. She laughed and agreed. She did NOT say whether or not the study will pay for transportation/accomodations for those who cannot afford to do so. I encourage all those who are truly interested to call her. She was a very friendly woman, and seems VERY interested in EDS and it's "relatives".

~LoneStarRose~

[Guest guest]

Good luck ,, my thoughts and prayers will be with both you and !!

Dr. Francomano from the NIH called me this morning

I just wanted to let you know that Dr. Francomano, of the NIH in land, returned my call of yesterday very early this morning. She said that she would like for both me and (oldest son) to come to Baltimore in early-mid January to participate in this study of genetic connective tissue disorders.

I thought the study was only for adults, but I suppose because he is 17, he is considered one for purposes of this study. I told Dr. Francomano about both and I having some autonomic nervous system dysfunction manifestion (neurocardiogenic syncope, narcolepsy, IBS), and how that seems linked to EDS. She agreed, and said, "We hope to find out how and why." I also told her that I am more Hypermobile than , but I think it is because of age. The more you stretch a rubber band, the "looser" it gets from use. She laughed and agreed. She did NOT say whether or not the study will pay for transportation/accomodations for those who cannot afford to do so. I encourage all those who are truly interested to call her. She was a very friendly woman, and seems VERY interested in EDS and it's "relatives".

~LoneStarRose~~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~