Summer Meetings!

The Rhode Island Ehlers Danlos Syndrome Awareness and Support group will be hosting a 3 year anniversary party on June 4th 2016 at 2pm at the Warwick Public Library located on Sandy Lane in Warwick RI.

Our next group meeting after that will be on July 30th with special guest speaker, Disability Attorney Mariam Lavoie. 

June16

July16

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Awareness Event Happening This Weekend!

 

POTS WALK and 5K Race Medford, MA

May 7th, 2016  10am

RI Ehlers Danlos Syndrome Awareness and Support group will be joining many others this weekend to raise awareness for POTS and raise some money for Dysautonomia International. Already over 400 people have signed up to participate in the event. It should be a great day with lots of fun! RI EDS will have a table set up at the event and will be handing out free awareness materials. We would love to see you there!!

Join us this Saturday!

If you would like to donate, or register to walk/run –https://www.crowdrise.com/2016POTSWalk5KRace

Please share this with your friends and family!

http://www.potswalk.com/race-details-and-schedule/

Race Details and Schedule

POTS Walk and 5k Race takes place along the scenic Mystic River in Medford, MA.  The race will start and end at the Mystic River Bend Reservation located next to Hormel Stadium.  The race is accessible by T using the Wellington station or by car with plenty of free parking available. This race is sanctioned by USATF. Participants are welcome to join us after the race for entertainment and refreshments.  Proceeds from this event will benefit Dysautonomia International in the support of POTS research.

Cost:

The registration fee is $30 per person.  Registration includes a free t-shirt and goody bag  for the first 500 registrants along with 6 free raffle tickets and post race refreshments and entertainment.  Additional raffle tickets may be purchased for $1 each on the day of the race.  Please register early.

If you are walking and would like to bring young children they are more than welcome.  They do not require registration and will not receive registration materials, bibs, or T-shirts.

Prizes:

Prizes will be presented to the top three men and women runners in the following age groups:  20 and under, 21-29, 30-39, 40-49, and 50 and over.

Event Schedule:

The race will start promptly at 10am.  Registration and bib pick-up will open at 8am and close at 9:30am.  Look for us under the windmill behind McGlynn Middle School.  Please plan to arrive early to pick up your bib.

A post race celebration including refreshments and entertainment will be provided until noon. 

Transportation and Parking:

The race course is accessible by T using the Wellington station.  A number of buses also service the area.  Plenty of free parking is available at Hormel Stadium.

Course Details and Safety

This race is sanctioned by USATF.  Runners are not permitted to have strollers, roller skates, skateboards, or bicycles on the race course.  Walkers may have strollers but will be asked to line up at the back of the field.

To make the course more accessible to POTS patients, we will be marking off a number of shorter distances along the race course.  Those that are unable to walk the entire course are encouraged to set their own goal and walk as much as they are physically able.  

Fundraising:

This race will benefit Dysautonomia International an organization devoted to funding POTS research.  Please consider helping us fundraise by making a personal or team fundraising page.  Prizes will be rewarded to the top fundraising teams. Thank you!

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Next Meeting and upcoming events

Our Next meeting will be April 30th 2016. We are meeting in the IDEA STUDIO at the Warwick Public Library located at 600 Sandy Lane, Warwick, RI 02886 2pm to 4:30.

Upcoming Events!

April 30th RI EDS Awareness and Support Group Meeting 2pm-4:30pm – Warwick Public Library WE ARE MEETING THIS MONTH IN THE IDEA STUDIO! 600 Sandy Lane Warwick, RI 02886. Guest Speaker Special Guest Speaker: Belinda J. Harrison, MSPT. Belinda is a women’s health physical therapist. Belinda enjoys specializing in treating patients with diagnoses that include urinary or fecal incontinence, constipation, pelvic pain, and pre and postpartum pain or pelvic floor weakness. She believes that it is truly a blessing to provide education and personalized care to women to rebuild their confidence back in their bodies. Belinda will be talking to us about the anatomy of a woman – pelvic floor and core muscles and what a Pelvic Floor Physical Therapists treats.

May 7th POTS WALK and 5K Race Medford, MA 10am Benefiting Dysautonomia International – RI EDS will have a table set up at this event! Please come out in support and join us, if you aren’t able to walk we would love to have help at our table.

To join the RI EDS Team: go to https://www.crowdrise.com/krista-2016potswalk5krace1/fundraiser/kristabrack to find out more about the event – https://www.crowdrise.com/2016POTSWalk5KRace We are still looking for volunteers for the day of to help out at the table. If you are interested, please contact Krista@rieds.org

May is Ehlers Danlos Syndrome Awareness month, what will you be doing to raise awareness? Looking for ideas or materials to raise awareness this May? Email Krista@rieds.org or Ginny info@rieds.org

Thinking about raising awareness with the medical community? Ask your doctor if you can bring some informational flyers into the office. In High School or College? See if you can have a school event to raise awareness and/or $$ for EDS. Have a child in school? We have some great information for educators and school nurses. Looking for small ways to raise awareness all month long? How about a couple Tee-Shirts you can wear when you go out, you could put a bumper sticker on your car or if you’d rather have something you can wash off, why not decorate your car with one of those window markers you can buy at any craft store? You could be a moving bulletin of EDS information.

Know of an event where we might be able to set up an awareness table this spring/summer, we want to know about it! You can email krista@eds.org, info@eds.org or come join the conversation on Facebook! Having trouble getting approved? Email our Facebook admin at info@rieds.org.

June 4th RI EDS Awareness and Support Group Meeting 2pm-4:30pm – Warwick Public Library LARGE Meeting Room 600 Sandy Lane Warwick, RI 02886.

June 11th Marfan Walk for Victory at Boston Commons SIGN UP  

TO STAY UP TO DATE ON LOCAL EVENTS CHECK OUT THE EVENT CALENDER – http://teamup.com/ksef9b75cbb080a6de/

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MEETING THIS WEEKEND 3/26/16

Hello everyone! I hope you can make it this weekend for an exciting meeting led by Ellen Smith.

I’m currently recovering from ankle reconstruction and will not be able to attend the meeting but I know it is going to be a great one. If you have any questions about this meeting or anything else about the group or EDS please contact Ellen at ellen.smith2@gmail.com or Ginny Law at info@rieds.org. I’ll be recovering this month and April but I’ll be back strong in May. You can still reach me here, it may take longer than usual for a response.

NEXT MEETING:

Saturday  March 26rd  2pm – 4:30pm

Warwick Public Library

Large Meeting Room

600 Sandy Lane Warwick, RI

Please join us this month as Ellen Lenox Smith leads a discussion on living life well with a connective tissue disorder. Ellen will be sharing with us how she and her service dog Maggie were matched and about the process involved with getting and caring for a service dog. She will also talk to us about self-advocating and becoming a medical cannabis patient in the state of RI. Ellen Lenox Smith has emerged as a leading voice for patients living with pain in Rhode Island. Mrs. Smith is a resident on a small farm in Scituate, Rhode Island with Stuart, her husband of 42 years. She is a Rhode Island ambassador for the US Pain Foundation and the Arthritis Foundation. Mrs. Smith is also co- director for medical marijuana advocacy  at the US Pain Foundation, staff writer for Pain News Network, and a board member of the Rhode Island Patient Advocacy Coalition (RIPAC). You can learn more about Ellen at her very informative website – http://ellenandstuartsmith.squarespace.com/

After this weekend our next meeting will be on April 30th 2016! Let us know what you are doing to raise awareness this May at info@rieds.org or Krista@rieds.org

Krista Brack

Krista@rieds.org

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Next Meeting – March 26th

Please join us this month as Ellen Lenox Smith leads a discussion on living life well with a connective tissue disorder. Ellen will be sharing with us how she and her service dog Maggie were matched and about the process involved with getting and caring for a service dog. She will also talk to us about self advocating and becoming a medical cannabis patient in the state of RI. Ellen Lenox Smith has emerged as a leading voice for patients living with pain in Rhode Island. Mrs. Smith is a resident on a small farm in Scituate, Rhode Island with Stuart, her husband of 42 years. She is a Rhode Island ambassador for the US Pain Foundation and the Arthritis Foundation. Mrs. Smith is also co- director for medical marijuana advocacy  at the US Pain Foundation, staff writer for Pain News Network, and a board member of the Rhode Island Patient Advocacy Coalition (RIPAC).

NEXT MEETING:

Saturday  March 26rd  2pm – 4:30pm

Warwick Public Library

Large Meeting Room

600 Sandy Lane Warwick, RI

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After March are next meeting is April 30th at the Warwick Public Library!

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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

Jan16Flyer

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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