Monthly Archives: August 2015

NEXT MEETING SEPTEMBER 12TH

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UPCOMING EVENTS:

September 12th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library SMALL Meeting Room 600 Sandy Lane Warwick, RI 02886. Special Guest speaker, Michael P. Healy PT, DPT, DOMTP, CPT, CSN, MBA, owner of Healy Physical Therapy and Sports medicine (with two locations in RI, East Providence and Cumberland) Dr. Healy has years of experience treating patients with connective tissue disorders and has many patients who travel from out of state, and even from outside the United States to be treated at Healy Physical Therapy and Sports Medicine. Dr. Healy will be talking to us about how physical therapy can be used to treat the whole body.

September 13th   Joint Meeting of the MA Chapter and the EDS/NE MA Support Group.  Where: Children’s Hospital Waltham 9 Hope Avenue Deveber Conference Room, 1pm-5pm.

September 19th2015 U.S. Pain Foundation’s Pain Awareness Event. Where: Miriam Hospital 164 Summit Ave., Providence, RI Hurvitz Board Conference Room. When: SEPTEMBER 19, 2015 2-4pm. Registration is not required. GUEST SPEAKER: James P. Crowley, MD, FACP “Overview of how we got to where we are today with no effective oral opioids”. INSPIRATIONAL SPEAKER: Jamie Toscano. Along with speakers on alternatives to consider. For more information, contact: Ellen & Stu Smith (401) 474-0115 or email- ellen.smith2@gmail.com

September 26th – 6th Annual Marfan Foundation New England Symposium – Manchester, NH. 8:00 AM – 4:00 PM WHERE: Best Western Plus Executive Court Inn and Conference Center 13500 South Willow Street Manchester, NH 03103. Early bird registration ends August 15! $35.00 adults; $20.00 children (5-17) before August 15th $45.00 adults; $30.00 children (5-17) after August 15th– For more information and to register for the event: http://www.cvent.com/events/6th-annual-new-england-symposium-on-marfan-syndrome-related-disorders/event-summary-590c858a6e5d446d86d66d25056e15a6.aspx?i=fe369c55-0180-4eab-accd-ab85328ef7de

October 24th RI EDS Awareness and Support Group Meeting 2pm-4pm Warwick Public Library large Meeting Room 600 Sandy Lane Warwick, RI 02886. Dr. Petra Klinge from Rhode Island Hospital will be our guest speaker. She will be talking about EDS, Tethered-Cord and Chiari. Dr. Klinge is a local Chiari expert who has taken a special interest in patients with Ehlers Danlos Syndrome.

November 14th RI EDS Awareness and Support Group Meeting 2pm-4pm Warwick Public Library large Meeting Room 600 Sandy Lane Warwick, RI 02886. Local physical therapist, Kevin Muldowney will be our guest speaker. Keven will be talking to us about his new book, Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS. http://www.chronicpainpartners.com/physical-therapy-for-living-life-to-the-fullest-with-ehlers-danlos-syndrome/

 

 

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RI EDS Awareness Events 2015

The Rhode Island Ehlers Danlos Awareness & Support Group was very busy in the month of May raising awareness, and we aren’t done yet!

We started off early sending requests in to our local newspapers to do a story featuring EDS in the month of May. Ellen and Stu were able to get a wonderful article in the paper: http://www.valleybreeze.com/2015-04-22/observer-smithfield-west/scituate-resident-suffering-ehlers-danlos-syndrome-spreads#.VV3lHk3bIdV

Ellen and Stu also made sure we had our Proclamation in for the first day of May

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(PICTURED LEFT: STU AND ELLEN AT THE STATE HOUSE HOLDING THE PROCLAMATION, RIGHT: CLOSE UP OF THE RHODE ISLAND PROCLOMATION photos curtesy of Ellen Smith and Krista Brack)

The first week of May we ran a week long awareness event at Miriam Hospital. We had a table with lots of information about EDS and other connective tissue disorders set up outside the cafeteria in the main hallway. We had EDS posters and lots of important awareness materials for doctors, medical and support staff, patients, family and anyone else who walked by. This was our second year hosting this event and it was even more successful than last year! We had many volunteers from the group come and spend hours manning the table. We had many doctors, nurses, techs, support staff, patients and family who stopped in at our table throughout the week. Volunteers handed out hundreds of pages of information to all those interested. We made some wonderful connections to doctors who currently have patients with a connective tissue disorder; and hopefully got the interest of some other doctors to take us on! We met others who either had a connective tissue disorder, or knew someone who did, some who thought it might be the answer they had been searching for and still more who had no idea a condition like EDS even existed. We had a wonderful time, friendships were made as well as connections and we can’t wait to go back next year!

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(PICTURES CLOCKWISE 1. SERVICE DOG MAGGIE GREATS PASSERBYS, 2. VOLUNTEERS FROM THE LEFT: ELLEN, JEN, CHRISTINE, AND DINA MAN THE TABLE, 2. CLOSE UP OF THE TABLE, 4. THE COMPLETE SET UP WITH VOLUNTER KRISTA MANNING THE TABLE photos curtesy of Ellen Smith and Krista Brack)

The second week of May found five of our members talking to the University of Rhode Island’s graduating physical therapy students! Ginny put it together and was joined by Ellen, Christine, Olivia and Patricia, who along with being a member of the RI EDS group Patricia is also the founder of the Rare Disease United Foundation. (www.RDUF.org)

Shortly after the presentation Ginny received this email:

‘On behalf of the URI PT Program faculty I would like to extend our sincere thanks for your participation in Wrap-Up Week!

 Thanks for putting together such a great group of panelists. The students really enjoyed and appreciated your presentation! Maybe you’d like to join us again next year! I’ll be in touch’

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(PICTURES 1. FROM THE LEFT: GINNY, ELLEN WITH SERVICE DOG MAGGIE, CHRISTINE, OLIVIA, AND PATRITIA 2. OLIVIA TALKS TO THE STUDENTS WHILE GINNY LOOKS ON photos cutesy of Ellen Smith)

Back in March, way ahead of the game, Ellen and Stu travelled to the University of Connecticut and did a similar presentation for them! They have also been invited back next year!

On Saturday May 16th members of the RI EDS group traveled to Salem Massachusetts to take part in the Marfan Foundation’s Walk for Victory. We joined ‘Team Zebra’, a team set up by Jon Rodis, who among other things heads up the New England/MA EDS support group. We were so pleased to join them and had a wonderful time! It was great fun to spend the day raising awareness with lots of people who are all in some way experiencing life with a connective tissue disorder. It was a beautiful day, nice and cool with blue skies. Many people were in attendance and there was food and music, with lots of laughter going around. We were also able to use our new group banner for the first time:

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(PICTURES: LEFT KRISTA AND IAN HOLD THE NEW BANNER, RIGHT STU HOLDS THE PROCLOMATION WHILE ELLEN, KRISTA AND IAN HOLD THE GROUP BANNER. Pictures curtesy of Diana Cleaveland and Ellen Smith)

Our first May event at Miriam led to another event in the third week of May. While manning the table at Miriam Ginny made a connection with a school nurse that lead to us being invited to have a table at the 2015 School Nurse Conference in Warwick Rhode Island. There were 250 school nurses in attendance from primary school up to university. We handed out lots of information including EDS and Marfan handouts, and school guides for nurses; we also had some who signed up to receive more information via email. They were happy to have us and will let us know in the future of other opportunities. Ginny was at it again talking to all of the other presenters, giving them information on EDS and lining up more opportunities for us to do community outreach. It was another hugely successful event we hope to do again next year.

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(PICTURES 1. TABLE SET UP FOR THE 2015 SCHOOL NURSE CONFERENCE IN WARWICK RI, 2. VOLUNTEERS JEN AND CHRISTINE AT THE TABLE photos curtesy of Krista Brack and Ginny Law)

Our last event for May will be our monthly meeting at the Warwick Public Library on May 30th where we will go over all our group events and talk about what individual members have done on their own this month to raise awareness. We are also going to have a guest speaker hosting a workshop on essential oils.

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We did not accomplish all of this on our own!

We received help from The Marfan Foundation, who sent us boxes of information on Marfan, EDS, and related conditions. They were kind enough to send us more information for the School Nurse Conference at the last minute that was invaluable to our event. The information they shared with us helped to make our many events this month successful and we look forward to working more with them in the future

We also received help from the US Pain Foundation who has been providing us with information and materials for events for the last two years. They provided the table cloth and lots of information and resources for chronic pain that we had at our Miriam Event. We would like to thank them for their continued support!

It is with profound gratitude that we thank the Marfan Foundation (http://www.marfan.org/) and the US Pain Foundation (http://uspainfoundation.org/) for providing our awareness and support group with printed materials to use in our outreach work. We are a small group and currently have no means of covering printing costs, without this help we would not have been able to accomplish as much as we did or reach as many people.

We would also like to thank Healy Physical Therapy and Sports Medicine, Inc. (http://www.healyphysicaltherapy.com/). They were very kind and helped with printing up and creating some of the materials used for the School Nurse Event.

All of the other materials provided at our events are printed up using money donated by group members and their family. We are currently discussing fundraising ideas that will enable us to continue our outreach efforts with more information on Ehlers Danlos Syndrome and related connective tissue disorders, if you would like to help us with this endeavor please contact Krista at krista@rieds.org .

Special thank you to EDS Awareness (http://www.chronicpainpartners.com/) for helping us promote our events and providing the wonderful Zebra T-Shirts you see so many of our members wearing in the photos! EDS Awareness is a wonderful organization helping support groups across the globe connect with each other and raise awareness together.

We would also like to thank the companies who provide us the materials we print for our events:

Ehlers Danlos Syndrome Network C.A.R.E.S., Inc.  and EDS Today for the amazing posters http://www.ehlersdanlosnetwork.org/ , http://edstoday.org/

Ehlers Danlos National Foundation www.ednf.org for the medical resource guides, and much of our information about EDS that we provide not only at these events but also at all of our meetings.

We would also like to thank ChiariGear (https://www.chiarigear.com/). We just love the ‘Pass it On’ cards they sell and when I forgot to order them until the last second they called me personally to let me know they were sending them 2 day shipping free of charge so that they would arrive in time, and they did! We got them Monday as we started our Miriam Event week. They were such a big hit that by the end of that week not one card was left.

We couldn’t have accomplished so much this month without the amazing group members and organizers of The Rhode Island Awareness & Support group who came out and volunteered their time, ideas, money and encouragement. To all of you mentioned and unmentioned THANK YOU. You are what make it all worth it. Special thank you to Xantha, Ginny, Jen and Christine for getting copies made and creating handouts for the school nurse event at the last minute, and to Krista, Ellen and Ginny for organizing these events, and providing so much assistance to the group. We will continue to raise awareness not just in May, but every day.

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