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.