CURRENT EVENTS

Our next two meetings are:

May 10thRI 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-12thEDNF 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-13thMarfan 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 13th6th 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

April Meeting

Our next meeting is April 12th

RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library

Large Meeting Room, 600 Sandy Lane Warwick, RI 02886.

Eric Palmer owner of PTI, Pedorthic Technologies, Inc will be giving a presentation during the first half of this meeting.
‘A native Rhode Islander, PTI owner Eric Palmer has more than twenty years of experience evaluating, fabricating, and fitting his patients with all types of custom-made orthotics and bracing.
Eric enjoys helping his patients remain independent by providing quality products and services that enable them to maintain their normal routine.’

The second half of the meeting will be to talk about May Awareness, our plans for May and what we are doing as a group into the summer. Don’t forget if you want to order an awareness T-Shirt let me know BEFORE April 5th!

I have a NEW EMAIL KRISTA@RIEDS.ORG if you would like to be added to the update list let me know. Thank you!

March Meeting

Warwick Public Library

Large Meeting Room

600 Sandy Lane Warwick, RI

Saturday  March 29th 2pm-4:30pm

Kevin Muldowney, owner of Muldowney Physical Therapy, will be presenting about the sacroiliac joint dysfunction commonly found with EDS patients. Kevin Muldowney is excellent in the treatment of mid back pain.  He uses a technique called muscle energy to assist in aligning the vertebrae in your mid back.  He gives his patients specific exercises to help correct their posture and strength, helping to ease your pain in time.

October Meeting

Our next meeting will be held on Oct. 26th at 1:30 pm – 3:30pm

Warwick Public Library,

600 Sandy Lane Warwick, RI

We will have a guest speaker starting at 2pm

Dr. Marcy Feibelman, Naturopathic Physician
Leaves of Change Natural Medicine

 

September Meeting!

The next support group meeting will be on September 7th at 1:00pm to 3:30pm at the Warwick Public Library, Small Meeting Room, 600 Sandy Lane Warwick, RI.

We will be going over information gathered during the EDNF Conference that was just held in Providence. We hope you can make it! I’m sorry I haven’t been putting up the meeting minutes on here, I know many of us aren’t always able to get to the meetings. If you have some web site knowhow or are willing to learn and would like to help please let us know!

There will also be a Pain Awareness Event on September 21st, 2-4pm at Miriam Hospital, Hurvitz Board Conference Room. This event is being put on by the US Pain Foundation.

Guest Speakers- George Pasquarollo, DO, FAAO “Prolotherapy and Platelet Rich Plasma”

JoAnne Leppanen RIPAC, Educational Briefing on RIPAC and Medical Marijuana Program in RI

Inspirational Speakers: Nicole Toscano and Bonnie Cunningham

Panel of Medical Marijuana Patients

TCAPP (The Coalition Against Pediatric Pain) and The RI Ehlers Danlos Support Group will also be at the event

Refreshments donated by Whole Foods

For more information about the US Pain Event please contact Ellen Smith 401-474-0115 or email ellen.smith2@gmail.com

For more information about the upcoming EDS support group meeting contact Diane at lovey529@cox.net, or Krista at kristalynn1977@hotmail.com

 

 

 

July Meeting!

Hello everyone! We’ve decided to start having our meetings every other month. Our next meeting will be on July 17th 2013 at the Warwick Public Library, Small meeting room 10am-12:30pm. We will be talking about the upcoming EDNF conference and the schedule for that, we will spend some time talking about local resources, and an update on how we are doing with raising awareness about EDS within the medical community. We will also be having a discussion on medical marijuana, how it can be used, why it is worth looking into and how the program works here in RI.

I hope you are able to join us! I’m very excited about this next meeting :) Please pass this along to anyone you think would be interested. Thanks!
Krista Brack : Kristalynn1977@hotmail.com

You can also contact Diane at lovey529@cox.net

I would also like to pass along some information, I ask that you also pass along this information especially to any doctors you think could benefit!

Pediatric Pain Think Tank

On Sunday, August 4, 2013, TCAPP and the Warren Alpert Medical School of Brown University will host the first-ever pediatric pain think tank, bringing together esteemed pediatric and adult medical experts from across the country to come together to share ideas and strategize how to offer better treatment. We need to get everyone together in one room and discover common ground. Dr Chopra, head of TCAPP’s Medical Advisory Board states “We need to educate each other from our different perspectives and training so we can find our what works and what doesn’t, what we know and what we need to know.” During the conference, anesthesiologists, psychiatrists, neurologists, geneticists, neurosurgeons, dentists, immunologists, hematologists, and cardiologists from the Warren Alpert Medical School, the University of California in Los Angeles, Johns Hopkins, Virginia Commonwealth University Medical Center, Tufts in Boston and other institutions will join forces to discuss how best to evaluate and treat children with Ehlers Danlos Syndrome. The aim is to generate a consensus statement to guide treatment of kids around the country and to guide forces to conduct multi-center clinical trials to test new therapies and treatments. The meeting is approved for AMA PRA Category 1 Credit. If you are a medical professional interested in attending, please submit the following information to info@tcapp.org and put Pain Conference in the Subject line: first name, last name, degree (if they are a doc or other professional), their affiliation (hospital, association etc), email See TCAPP.org for more information

Meeting News 3/25/2013

Thank you to all who came to our first meeting. Our next meeting is going to be on April 27th 2013 at 2pm-4:30pm. I’ll post the full agenda closer to the time, but one thing we will be doing at that meeting is making plans for May, Ehlers Danlos Awareness month. If you can not make the meeting but would like to let us know what your plans are for the month of May let us know, we would love to hear from you!

Currently we are going to alternate the days the meetings are on so that more people will be able to attend. Our next meeting is again on a Saturday, however the one to follow will be during the week on a Wed or Thur in the afternoon.

Hello world!

Welcome to The Rhode Island Ehlers Danlos Syndrome Awareness, Information and Support Group.  Our first meeting is Saturday March 23rd, 2013 2pm – 4pm in the Small Meeting Room at the Warwick Public Library.