IMPORTANT NEWS

IMPORTANT INFORMATION FOR RI CANNABIS PATIENTS: There are proposed changes to the MMJ program in RI that would add taxes to patients and caregivers who are growing medicine. For patients they are proposing 150 dollars – PER PLANT. The charge for caregivers is more than double that. This is a way for our state to get back tax dollars by taxing the sick for a medicine they rely on to function. You can read about it here http://ripr.org/post/new-tax-marijuana-plants and here: http://ripatients.org/

To stay up to date on the changes and what YOU can do to stop this from becoming our reality please follow RIPAC for the latest information. We do not pay taxes on our pharmacy medications and we should not be paying taxes on the medicine we grow in our homes!

WE ALSO HAVE A MEETING THIS WEEKEND FEBRUARY 6TH 2PM SMALL ROOM – WARWICK PUBLIC LIBRARY ON SANDY LANE.

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TOMORROWS MEETING HAS BEEN POSTPONED

THE MEETING TOMORROW HAS BEEN POSTPONED! NEW DATE FEB 6TH 2PM. Although it seems that we will mostly be missed by the big winter storm I decided to go ahead and postpone due to the time it is expected to snow, the same time as the start of our meeting. I’m very sorry for those of you who planned on making the trek out tomorrow!

NEXT MEETING:

Saturday February 6th 2pm – 4:30pm

Warwick Public Library

Small Meeting Room

600 Sandy Lane Warwick, RI

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Meeting this Saturday, 2pm in Warwick

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I am keeping an eye on the weather, if we get hit with a bad storm we may need to postpone our meeting (possibly to Feb 6th), I will update everyone here, on Facebook and through email to let you know if that happens. AS OF NOW WE ARE MEETING THIS WEEKEND!

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End of the year news

Happy Holidays to everyone! We had a wonderful last meeting of the year yesterday, thank you everyone for coming! Here is the information for the next two meetings we have booked. We may meet in February as well but do not have a room booked at this time.

January 23rd RI EDS Awareness and Support Group Meeting 2pm-4pm Warwick Public Library SMALL Meeting Room 600 Sandy Lane Warwick, RI 02886. This will be a workshop style meeting; we will be talking about the plans for the year ahead. We will be asking our members what speakers they would like to have in the 2016 year. We will also talk about the different conferences happening in 2016, and awareness events and advocacy opportunities that are available!

March 26th RI EDS Awareness and Support Group Meeting 2pm-4pm Warwick Public Library LARGE Meeting Room 600 Sandy Lane Warwick, RI 02886. Speaker TBA

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MEETING TOMORROW 12/12/15

Meeting Reminder: Our December meeting is this Saturday December 12th from 2pm to 4pm at the Warwick Public Library in the LARGE room on Sandy Lane in Warwick RI 

We will not be having a speaker this month. Instead we are going to talk about how to prepare for a new doctor appointment, hospital stay or ER visit. We will also be talking about tips and tricks that we each have discovered along the way. We will also talk about upcoming events and the year ahead. This will be a social workshop style meeting, I hope we have lots of participation! If you can’t make the meeting but would still like to share some tips and tricks you have learned along the way, email them to me at krista@rieds.org  The meeting will end right at 4 this weekend, but you are welcome to remain at the library or meet up at the Dunkin Donuts nearby to continue chatting with each other! 

I’d also like to thank everyone who came out to the party last weekend! It was a great time and there are lots of pictures up on the event page for anyone who wants to check them out!

At PT Trish gave me homework – to rest. I don’t do that well so she added on that I should work on a song I sing sometimes while she is treating me, so please thank Trish for this:

 For my fellow Zebra’s – EDS Days of Christmas

On the first day of Christmas Ehlers Danlos Syndrome gave to me, A Tethered Spinal Cord and a Chiari (KeeRREEE)

On the second day of Christmas Trish Meegan (my physical therapist) fixed for me, two slipping knees, a tethered spinal cord and a Chiari

On the third day of Christmas the hospital gave to me, 3 IV bags of fluids, two slipping knees, a tethered spinal cord and a Chiari

On the fourth day of Christmas EDS gave to me, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari

On the fifth day of Christmas Eric Palmer(Orthotics) gave to me, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered spinal cord and a Chiari

On the sixth day of Christmas urgent care gave to me, six kinds of crutches, 5 helpful braces, four doctor appointments, three bags of fluids, two slipping knees, a tethered spinal cord and a Chiari

On the seventh day of Christmas EDS gave to me, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered spinal cord and a Chiari

On the eight day of Christmas my EDS friends gave to me eight Zebras Dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered spinal cord and a Chiari

On the ninth day of Christmas Ehlers Danlos Syndrome gave to me, nine complicated surgeries, eight zebras dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari

On the tenth day of Christmas Dr. Chopra (My pain doctor) gave to me, ten trigger point injections, nine complicated surgeries, eight zebras dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari.

On the eleventh day of Christmas Mike Healy (my Physical Therapist) fixed for me, Eleven slipping ribs,  ten trigger point injections, nine complicated surgeries, eight zebras dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari.

On the twelfth day of Christmas EDS gave to me, 12 separate specialists, Eleven slipping ribs, ten trigger point injections, nine complicated surgeries, eight zebras dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari

Written by: Krista Brack of www.rieds.org with the help of Patricia Meegan at Healy PT 12/9/15

 Please feel free to correct my grammar, and to customize the song for yourself! Happy Holidays everyone, and if I don’t see you before – HAPPY NEW YEAR

 Our January meeting will be at the same place in the small room, Saturday, January 23 2016 2pm-4:30

 

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Meeting this weekend! 11/14/15

NEXT MEETING: Saturday November 14th 2pm – 4:30pm

Warwick Public Library – Large Meeting Room

600 Sandy Lane Warwick, RI

Living Life to the Fullest With Ehlers Danlos Syndrome

Kevin Muldowney, MSPT, owner of Muldowney Physical Therapy located in Cranston RI, has published a book outlining a specific exercise protocol designed for people who are diagnosed with Ehlers Danlos Syndrome (EDS).

Kevin Muldowney has been treating the EDS population since 2005. His protocol was designed to slowly and safely progress patients with EDS through an exercise program to ultimately strengthen their entire body, while stabilizing numerous joint subluxations/dislocations commonly associated with the genetic disorder.

Kevin will be discussing his book and the protocol he came up with as well as answering questions. He will also be available to sign books, and there will be books available for purchase for anyone interested

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Upcoming Events

If you are in the area please come join us. There is no need to RSVP and the event is free. Feel free to bring a drink, a snack to share (or to keep for yourself) or pillows to sit on if you aren’t comfortable in chairs. We are a very relaxed and fun group, this should be a great meeting. Seating will be limited, the room can hold 60 and it is handicap accessible, hope to see you there! For any questions you can reach me at krista@rieds.org

NEXT MEETING: Special Guest Speaker Dr. Petra Klinge

Saturday October 24th 2pm – 4:30pm at the Warwick Public Library in the Large Meeting Room, 600 Sandy Lane Warwick, RI

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Our next meeting after this one will be:

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/

And don’t miss the very first meeting of RI’s First Ehlers Danlos Kids Support Group. Providing support, education, and advocacy to children and families in RI. That will be on October 17th at the Warwick Public Library. The meeting will start at 10am in the small meeting room. For more information please contact contactus@eds-kids.com, visit them on Facebook: https://www.facebook.com/groups/edsforkids/ or check out the website – http://www.eds-kids.com/

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Marfan Foundation One Day Symposium Next Weekend

Next Saturday, September 26th 2015, is the 6th Annual New England Symposium on Marfan Syndrome & Related Disorders in New Hampshire. A full day discussion for patients, families, and healthcare professionals addressing managed/coordinated care for those affected by Marfan syndrome, Loeys-Dietz syndrome, Ehlers-Danlos syndrome and other related connective tissue disorders.

Krista Brack will be there representing the RI Ehlers Danlos Syndrome Awareness and Support group. She attended last year and had an amazing time. She will be staying at the hotel on site, anyone looking to connect with her at the conference should email her at Krista@rieds.org. Hope to see some of you there!

Marfan Event

 

 

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