Our next two meetings are:
May 10th – RI EDS Awareness/Support Group Meeting 10am-12pm Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886 MAY is EDS awareness month! Looking for ways to raise awareness in May? Come see what we will be doing!
June 7th – RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886. Jennifer Walsh will be giving a broad overview of the genetics of EDS during the first half of this meeting. Jennifer Walsh is a Genetic Counselor with Hasbro Children’s Hospital and Rhode Island Hospital.
And here are some other things happening in the area in the coming months. If you know of an event that should be listed please let me know email krista@rieds.org
May 4th – EDS NE/MA Support Group Meeting–May 4th- Jon Rodis at WSALMGCDJM@aol.com at Children’s Hospital-Waltham from 2 PM to 5 PM
May 10th – Marfan Foundation’s Walk for Victory- Salem, MA 12 noon– Salem Willows Park
Salem, Massachusetts contact- Kerri Cavanagh 516-883-8712 ext.138 kcavanagh@marfan.org
May 17th – Diva’s Day Out – The Mindz Eye- 11 Airport Road Warwick, RI – Join the Dysautonomia Diva’s for a day of rejuvenation, workshops, meditation class, lunch and two Diva Services of your choice! Tickets are $99.00 until May 10th, $119.00 after. Contact Amanda 401-573-2621 or email Dysautonomiadiva@hotmail.com
June 7th – RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886. Jennifer Walsh will be giving a broad overview of the genetics of EDS during the first half of this meeting. Jennifer Walsh is a Genetic Counselor with Hasbro Children’s Hospital and Rhode Island Hospital.
July 10th-12th – EDNF 2014 Learning Conference –It will be held this year at the Hilton Americas Hotel in Houston Texas. Registration is now open – www.ednf.org
July 10th-13th – Marfan Foundation Conference in Baltimore, MD – It will be hosted by Johns Hopkins Hospital
July 11th-14th – 2014 Dysautonomia International Conference & Lobby Day – Hyatt at Dulles International Airport in Herndon, Virginia, just outside of Washington, D.C. Registration for the conference is $175 per person before May 1, 2014 and $200 thereafter. Registration includes participation in all seminars, presentations, social activities, lunch on Saturday and Sunday, and a Saturday night Awards Dinner. Bus transportation to and from Capitol Hill for Monday’s Lobby Day is also included. Seating is limited, and registration will be accepted on a first come, first serve basis. The 2013 conference sold out well in advance, so we recommend registering early.
July 17th-19th – The Center for Ehlers Danlos Syndrome Alliance (CEDSA) ‘Matrix of EDS’ conference is being held in Grand Rapids Michigan. It will be at the Amway Grand Plaza Hotel.
| September 13th – 6th Annual New England Symposium-September 13-Elliot Hospital-1 Elliot Way-Manchester, NH (10:00 am – 3:00 pm) Join us in New Hampshire on Saturday, September 13, for a one day educational symposium on Marfan syndrome and related connective tissue disorders. Drs. Hal Dietz, Thor Sundt, and Brad Tinkle are the keynote speakers this year. Topics include Marfan syndrome, Loeys-Dietz syndrome, Ehlers-Danlos syndrome, pain management, growing older with connective tissue disorders, preparing for surgery, applying for Social Security Disability, genetic testing, and more. Please mark your calendars. Registration coming soon. Cost:$35 per adult/$20 per child (6 to 17 years) before August 13, 2014. $40 per adult/$25 per child after August 13, 2014.Fee includes continental breakfast and snacks. Questions: Contact Rene Jones or Kaddy Ackroyd at coordinator@nhvtmarfan.org |