Winter News

RI EDS WISHES EVERYONE SAFE AND HAPPY HOLIDAYS!

This weekend we will be at the annual Dysautonomia Support Network’s holiday party, Join us!!

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you can find out more by joining the event page:

https://www.facebook.com/events/1199044496830387/

RI EDS will be meeting next January 28th 2017. We will be in the SMALL room this month and February due to the Library running different events in the large room. Please note that the small room only holds 25 people so we are asking those interested to please RSVP on the event page on Facebook or by emailing Krista at krista@rieds.org, if we have more people rsvp than the room can hold we will look at other options for the meetings. SIgn up for our email list and never miss a meeting! Email Krista@rieds.org

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NOVEMBER MEETING 11/19/16

MEETING TOMORROW:

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WE WILL NOT MEET IN DECEMBER, INSTEAD PLEASE JOIN US AT THE DYSAUTONOMIA SUPPORT NETWORKS ANNUAL HOLIDAY PARTY DECEMBER 4TH. Join us for our annual holiday celebration. This family event will feature an inspirational keynote address by Dr Raymond, A Patient Fair, A “paw” signing with Ellen Smith and Maggie the service dog, Raffles, Holiday Cookie Swap, Crafts for the kids, fun photo opportunities and a special guest from the North Pole.

Please join the event page for more information, I’ll post the flyer as soon as I have it! https://www.facebook.com/events/1199044496830387/

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TETHERED CORD PANEL

Come join us this weekend for our October Meeting!

Our October meeting will feature a panel of tethered cord release patients who will be talking to the group about the personal experiences they had when going through diagnosis, surgery and recovery for Tethered Cord Release. We have gotten together people of different ages, who have been treated by different doctors, some who had surgery years ago, and others who had surgery just recently in order to get the best variety of experiences possible. The panel will also be answering questions, please feel free to send any questions ahead of time to Krista@rieds.org. The meeting will take place on October 8th at 2pm at the Warwick Public Library, no RSVP is needed but space is limited!

This will be a patient panel, no doctors will be on the panel and the panel will not be giving medical advice.

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Our next meeting will be November 19th at the Warwick Public Library, Sandy Lane at 2pm

Don’t miss these other local events!

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Summer News

Our next meeting will be on September 24th at 2:30 at the Warwick Public Library on Sandy Lane. Here are some other things going on in the area!

August 7th Dysautonomia Support Network Monthly Meeting Panera Bread: Panera Bread – 103 Taunton Street, Plainville, MA 02762 3-5pm

 

August 28th EDS New England Teens and Twenties Cookout – EDS Teens and Twenties (EDSers from age 13-29) group is having a cook-out August 28th 1-5pm at Rachel Stevens house in Cranston, RI. We’ll have vegetarian and gluten-free options, and we have one to two air-conditioned rooms available if someone has a POTS spell and needs to rest where it’s cool. Please contact Rachel on facebook or Email for the address and more information: stevenson.rachel2@gmail.com Facebook Page: https://www.facebook.com/groups/453916298086367/

 

September 17th US Pain Foundation Pain Awareness Event: Johnston Senior Center 1291 Hartford Ave, Johnston RI. 2-4pm Speakers: Jessica Papa PT;DPT, speaking on myofascial release and Dry Needling, Ellen Smith: Meet Maggie the Service Dog and learn what a service dog can do for you, Stuart Smith, speaking on the role of a caregiver with tips on caring for yourself while caring for another, and Bill Van Ollefen, MBSR, C.M.I  and Valarie Fosterfrom CT speaking about “Pathway to Mindfulness” For more info contact Ellen Smith at ellen@uspainfondation.org

 

September 18th Marfan/EDS New England/MA Joint Get together on September 18 at Children’s Hospital Waltham (9 Hope Avenue).  Join us for some good food and good company-a real family reunion type atmosphere.  It most likely will run from 2 pm to 5 pm as we have in past years.  (more details to come) Contact Jon Rodis for more information – wsalmgcdjm@comcast.net

 

September 24th RI EDS Awareness and Support Group Meeting 2pm-4:30pm – Warwick Public Library LARGE Meeting Room 600 Sandy Lane Warwick, RI 02886. Special meeting about nutrition and gardening with two guest speakers!

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

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MEETING THIS WEEKEND!

We have our summer meeting this weekend with special guest speaker Mariam Lavoie.

Our next meeting will be September 24th!

Here are the latest current events:

July 30th RI EDS Awareness and Support Group Meeting 2pm-4:30pm – Warwick Public Library LARGE Meeting Room 600 Sandy Lane Warwick, RI 02886. Guest Speaker: Mariam A. Lavoie is a Social Security Disability Attorney for Rhode Island, Connecticut, and Massachusetts. She is an Associate Attorney with Marasco & Nesselbush, LLP. With more than 20 years of legal experience, she will be talking to us and answering questions about the process of filing for disability.

August 7th Dysautonomia Support Network Monthly Meeting Panera Bread: Panera Bread – 103 Taunton Street, Plainville, MA 02762 3-5pm

August 28th EDS New England Teens and Twenties Cookout – EDS Teens and Twenties (EDSers from age 13-29) group is having a cook-out August 28th 1-5pm at Rachel Stevens house in Cranston, RI. We’ll have vegetarian and gluten-free options, and we have one to two air-conditioned rooms available if someone has a POTS spell and needs to rest where it’s cool. Please contact Rachel on facebook or Email for the address and more information: stevenson.rachel2@gmail.com Facebook Page: https://www.facebook.com/groups/453916298086367/

September 17th US Pain Foundation Pain Awareness Event: Johnston Senior Center 1291 Hartford Ave, Johnston RI. 2-4pm Speakers: Jessica Papa PT;DPT, speaking on myofascial release and Dry Needling, Ellen Smith: Meet Maggie the Service Dog and learn what a service dog can do for you, Stuart Smith, speaking on the role of a caregiver with tips on caring for yourself while caring for another, and Bill Van Ollefen, MBSR, C.M.I  and Valarie Fosterfrom CT speaking about “Pathway to Mindfulness” For more info contact Ellen Smith at ellen@uspainfondation.org

September 24th RI EDS Awareness and Support Group Meeting 2pm-4:30pm – Warwick Public Library LARGE Meeting Room 600 Sandy Lane Warwick, RI 02886. Special meeting about nutrition and gardening with two guest speakers!

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

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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. 

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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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