Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 In case any are interested, I copied this from Judy's email on the EDNF site. Personally, I plan to go - I can't wait to see Sue Ginley, Schoenberg, Deb (are you going Deb?) and I HOPE Jill, our gracious list leader may be able to attend! Love Lana Author: Judy Giddy-King (---.ipt.aol.com) Date: 01-28-04 17:06 Hi All, I want to give you an update on the 2004 EDNF Conference. I hope you are all as excited about this event as I am. We have looked at evaluations of past conferences and tried to give you all the conference you asked for. The conference dates are as follows: July 14-18, 2004 July 14th, Wednesday, is set up mainly for the group representatives meeting July 15, Thursday, we have the opening session, workshops, and opening reception. July 16, Friday, workshops continue. Later that day, around 3:00 you will be on your own to sight see or relax, except for our lucky representatives. The group reps will be meeting again for part two of their group rep meeting full of stimulating ideas to take back to your group. Don't worry group reps, we don't plan to keep you all night. Probably from 3:00-5:00. (For sight-seeing information call the Buffalo Convention & Visitors Bureau at 1-8882BUFFNY or 1- for those of us who don't like to figure out those letters.) July 17, Saturday, we are very excited to have the following at our Medical Talks: Dr. Byers, Dr. Ulrike Schwarze, Dr. , and Pepin MS, CGC - all of whom are from the University of Washington, Dept. of Pathology, Collagen Diagnostic Laboratory. Dr. Byers will be speaking about the Types of EDS and Testing in EDS, an update. Dr. Schwarze will be enlightening us about a new type of EDS - the cardiac valvular form. Pepin will be speaking about the Vascular Type of EDS - assessment, testing, and treatment. Dr. will be discussing the Classical Type of EDS - moving towards laboratory diagnosis in real time. Dr. Clair Francomono of the s Hopkins Bayview Medical Center, in Baltimore, MD will be updating us about ongoing research. Dr. Mark will be speaking about Ob/Gyn issues. There will also be workshops after the Medical Talks on Saturday. Workshops Thur-Sat include the following speakers: Dr. Agnew - Introduction to identification and management of common Foot and Ankel manifistations of EDS Pepin, MS, CGC and Dr. - Genetic counseling in EDS Koepp, Naturopathic Doctor, Certified Herbalist- Achieving better health naturally through nutritional means Corcoran, PT and Jill Carnes, MSPT - Treatment strategies for EDS and techniques to maximize function and independence. Hamilton, MS,RD,CNSD- Nutritional considerations for individuals with EDS, oral, enteral, and parenteral nutrition therapy. Wee - Introduction to Tai Chi for people with EDS. Dr. Craig, MD surgeon- The unstable shoulder in EDS Dr. Tim Special - Prolotherapy - stimulating ligament repair. Dr. Petros Tsipouras - The Clinical Phenotype of the Ehlers-Danlos Syndrome. Teri , Reiki Master and Reiki I,II - Reiki and Energy an interactive session. Kathy Panepento, RN - Aquatic Therapy - pool session Reverend - Depression and Coping Mechanisms Dr. Graham - The heart and EDS - testing and management Dr. Mark LaVallee and Dr. Y.R. Kumar - Panel discussion -Clinicians view of EDS. Pearls of wisdom from two doctos who see dozens of EDS patients. Dr. Byers, Dr. Ulrike Schwarze, and Dr. - Laboratory testing and clinical variability in EDS Dr. Byers, Dr. Ulrike Schwarze, and Pepin, MS, CGC - Natural history of the vascular form of EDS. There are many more to post, once I get the confirmations in, so stay tuned! We have 12 other speakers who have agreed to come, but I must wait for written confirmation. They say good things come to those who wait... Can't wait to see you all there! Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 From: llchriste@... Subject: 2004 EDNF Conference In case any are interested, I copied this from Judy's email on the EDNF site. I would love to go, but it will depend on if my husband gets this new job we are waiting to hear about. Are there allot of teenagers that go? I don't know if Dylan will be up to traveling, but if this new work that Mike has taught me, does the trick, he should be able to go too. What would the teens do there? Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 From: llchriste@... Subject: 2004 EDNF Conference In case any are interested, I copied this from Judy's email on the EDNF site. I would love to go, but it will depend on if my husband gets this new job we are waiting to hear about. Are there allot of teenagers that go? I don't know if Dylan will be up to traveling, but if this new work that Mike has taught me, does the trick, he should be able to go too. What would the teens do there? Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 From: llchriste@... Subject: 2004 EDNF Conference In case any are interested, I copied this from Judy's email on the EDNF site. I would love to go, but it will depend on if my husband gets this new job we are waiting to hear about. Are there allot of teenagers that go? I don't know if Dylan will be up to traveling, but if this new work that Mike has taught me, does the trick, he should be able to go too. What would the teens do there? Cindy C. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.