NEXT MEETING SEPTEMBER 12TH

Sept15Flyer

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’

URI1URIOliviaGinny

(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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June15Flyer

Our next meeting will be June 27th! We will also have an informal gathering this summer. It will be at a different location, if you have a place you think would work let me know! More details on that as I have them.

Our next meetings, all at the Warwick Public Library located at 600 Sandy Lane in Warwick, RI are:

June 27th 2015

September 12th 2015

October 24th 2015

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2015 School Nurse Conference Awareness Event

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We had a wonderful time today at the School Nurse Conference. Thanks to everyone who came out. Special thanks to Ginny Law​ for getting us the opportunity and working tirelessly to get us even more opportunities for community outreach! Thanks also to Krista Brack, Xantha McCartney​, Jen Corneau​ and Christine Morphis​ for volunteering their time and resources to make this event so successful. It was an amazing event. They were very happy to have us and will let us know in the future of other opportunities for us to raise awareness! If anyone else has pictures we would love to see them!

Some resources provided to us for free from the Marfan Foundation and Healy Physical Therapy and Sports Medicine, Inc. We thank them both for their continued support!!

Other materials printed/provided by the Rhode Island Ehlers Danlos Awareness and Support group with assistance from Ehlers Danlos Syndrome Network C.a.r.e.s. , Inc., EDS Today, and the Ehlers Danlos National Foundation.

If you would like to help us continue to reach more people with our community outreach efforts we need help with our printing costs! If you would like to help us with the printing costs and other group activities there is a donate button to the right of the main page on our website (www.rieds.org). If you would like to donate by check or some other way such as office supply gift cards please contact Krista – krista@rieds.org. Currently all of our costs are paid for directly by our members, most of whom are too ill to work but give what they can to keep our efforts going, we could use your help!

http://www.marfan.org/

http://www.healyphysicaltherapy.com/

http://www.ehlersdanlosnetwork.org/

http://edstoday.org/

http://www.ednf.org/

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Next Meeting and upcoming events

May15Flyer2

May 30th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. We will have an update on our May events; we would love to hear from you about what you did this May to raise awareness. We will also be discussing the summer conference season and will have a guest speaker who will be doing a workshop on using Essential Oils.

June 7th Joint Meeting of the Ehlers-Danlos New England/Massachusetts Support Group and the Massachusetts Chapter of the Marfan Foundation at Children’s Hospital in Waltham, MA from 1 PM to 5 PM.  Contact Jon Rodis for more information. Jon’s new email – wsalmgcdjm@comcast.net

June 27th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Details to follow.

September 12th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library SMALL Meeting Room 600 Sandy Lane Warwick, RI 02886. September is Pain Awareness Month, it is also Chiari Awareness month!

September 19th –US Pain Foundation Pain Awareness Event at Miriam. Details to follow!

Upcoming Conferences:

 June 25th -27th –CEDSA (Center for Ehlers-Danlos Syndrome Alliance) Conference-Romulus, MI https://cedsa.org/cedsa-info/matrix-of-ehlers-danlos-syndrome-conference-2015.html

 August 6th–9th– The Marfan Foundation Conference-Chicago, IL http://www.marfan.org/resources/patients/conference

August 13th-15t– EDNF Conference-Baltimore, MD http://ednf.org/annual-conference

September 26th – Marfan Foundation New England Symposium – Manchester, NH

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Come join us today at the Marfan Foundation’s Walk For Victory!

We will be joining the Marfan Foundation and the New England EDS group in this years Walk for Victory! I’ll be there around 11:30 wearing my EDS shirts and carrying a banner for the RI group, I should be easy to spot 😉 Here is the information that is up on the website for anyone looking to join us:

Location

Salem Willows Park
167 Fort Avenue
Salem, Massachusetts

Registration & Check-in: 12:00 pm

Walk Start: 12:30 pm
Join us for our 2nd Annual Walk for Victory and help us raise awareness and advance our life-saving work. Grab a friend, join a team, or make your own team and get ready for some fun in the sun! Enjoy a mile-long leisurely walk with other affected families and friends and then celebrate with some snacks, music, and games!

Benefits for Walkers:
– Your own personal or team fundraising webpage
– Snacks, games, and DJ entertainment
– The chance to connect with others in your community
– Satisfaction in knowing that you are helping to save lives and improve the quality of life for the many thousands of individuals and families affected with Marfan syndrome and related disorders.

Additional Details:
– Your registration fee covers your entry fee into the walk and all food and activities
– Every walker that raises at least $100 will get an exclusive Walk for Victory t-shirt
– There will be prizes for Top Fundraisers

REGISTER TODAY!

Early Bird Registration (through April 14) – FREE

Standard Registration (April 15 – May 15) – $10 per person

Walk Day Registration (May 16) – $20 per person

http://www.firstgiving.com/marfan/2015WFV-Mass

 

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Awareness Event Opportunity

Miriam Hospital Awareness Event: A full week of awareness 8am to 5pm daily. We need you to help out! Sign up to be a volunteer by emailing Krista – Krista@rieds.org or you can also sign up on our Facebook page in the events area, please note what time slot you will be filling in for.

Starts: Monday May 4th 2015

Ends: May 8th 2015

We will have a table set up directly outside of the cafeteria on the first floor of Miriam Hospital.

We will have a table with our Proclamation displayed as well as a couple of small posters with EDS information, information to hand out like the EDNF brochures and others. We are looking for people to man the table a few hours a day; we are looking for people who want to help that have been affected by EDS (yourself, friend or family member). You don’t need to be overly knowledgeable about EDS to participate, We will have all the information to provide. The most important thing is to be non-confrontational, be pleasant, we want to be remembered well and invited back again next year. That doesn’t mean you can’t disagree, we had some wonderful discussions happening last year and everyone was great. Be pleasant, friendly and neat, those are the only responsibilities involved! It will be fun to get out and raise awareness for EDS, connective tissue disorders and related conditions, and maybe make a new friend while you are at it.

AS OF NOW WE NEED VOLUNTEERS FOR EVERY DAY.

MONDAY – no one signed up for 8am to 3pm. I will be here in the morning, looking for company

TUESDAY – 8-10 and 2:30-5pm no one signed up, I could use at least 1 more at 12-2:30

WEDNSDAY – 8-10 and 12-2:30 need 1 or 2 more people, no one signed up for 10-12, 2:30-5

THURSDAY – No one signed up for the 8-10 or 2:30-5, need 1 or 2 more at 12-2:30

FRIDAY – 1 or 2 in the morning, no one has signed up for the 12-3

IF YOU SIGNED UP ON FACEBOOK PLEASE CONFIRM THAT YOU WILL BE THERE AND NOTE AT WHAT TIME

TIME FRAMES ARE SUGGESTIONS ONLY, IF YOU WOULD LIKE TO COME AT A DIFFERENT TIME PLEASE LET ME KNOW! Also if you can only come for an hour or would like to be available in case someone can’t make their time please let me know, email krista@rieds.org

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