Join us this weekend for our 2017 planning session!

MEETING INFORMATION: THIS WEEKEND!

Saturday January 28th 2pm – 4:30pm

Warwick Public Library

Small Meeting Room

600 Sandy Lane Warwick, RI

 

TOPIC: Our first meeting of 2017 kicks off with a planning session for the year ahead. This will be a workshop style meeting; we want your input! We will be asking our members what speakers/topics we want to focus on in 2017. We will also talk about the different conferences happening in 2017, plan May awareness events and share upcoming advocacy opportunities.

We will be meeting in the SMALL meeting room this month!

Come learn about EDS, make some friends and help us plan 2017 to make it our best year yet!

OTHER UPDATES:

  1. Rare Disease Day is February 27th!
  2. RDLA is hosting a Rare Disease Week in Washington DC Events from Feb 27th to March 2nd including a conference, Lobby day and a Rare Artist Reception that features one of our own members, Kayla McEvoy! You can see her submission here: http://www.rareartist.org/portfolio/zebras-matter/ Find out more about Rare Disease Week in DC here: http://rareadvocates.org/registration-now-open-for-rare-disease-week-on-capitol-hill/
  3. One of the events in DC will be a rally at the NIH, I’ll be asking for T-Shirt designs from our members for an Awareness T-Shirt to wear for the event, I will be there representing rare disease patients in RI, I’d love an EDS focus but with the other rare co-morbids as well, let’s see what you guys come up with! (feel like making a design to try it out? TeeSpring and vista print both have easy to use tee shirt design programs)
  4. Along with Rare Disease Day February also brings us Marfan Awareness month, please consider helping raise awareness for our sister condition next month. The Marfan Foundation always has wonderfully informative posts to share all month long.
  5. OUR NEXT MEETING AFTER THIS WEEKEND IS FEBUARY 18TH 2PM SMALL MEETING ROOM 600 SANDY LANE WARWICK RI

I hope to see you this weekend at the meeting, but if for any reason you aren’t able to attend but would still like to share your ideas and goals for the year ahead you can email me any time krista@rieds.org

LET’S START THINKING ABOUT MAY AWARENESS ACTIVITIES NOW! SEND YOUR IDEAS TO krista@rieds.org OR POST THEM ON FACEBOOK!

Would you like to be on our May Awareness Committee? You only need the desire to raise awareness in order to help, materials will be provided!

You are all so important to this group, I couldn’t be happier with our group and how we are here to help each other and find support together, I thank you all for joining us for another year!

Krista Brack

Krista@rieds.org

www.rieds.org

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Next Meeting: January 28th 2017

Happy New Year 2017!

Our first meeting of 2017 kicks off with a planning session for the year ahead. This will be a workshop style meeting; we want your input! We will be asking our members what speakers they would like to have in 2017. We will also talk about the different conferences happening in 2017, plan May awareness events and share upcoming advocacy opportunities. We will be meeting in the SMALL meeting room this month!

Come learn about EDS, make some friends and help us plan 2017 to make it our best year yet!

If you are in the MA/Boston there is a meeting happening this weekend!

EDS New England/Massachusetts Support Group-Joint Meeting-December 11th

Joint Meeting of the Ehlers-Danlos New England/Massachusetts Support Group and the Massachusetts Chapter of the Marfan Foundation

When: Sunday-December 11th-1 PM to 4:30 PM

Where: Children’s Hospital in Waltham-9 Hope Avenue-Deveber Conference Room-Lower Level

-On December 11th , we will hold a Joint Meeting of the Ehlers-Danlos New England/Massachusetts Support Group and the Massachusetts Chapter of the Marfan Foundation.

After some brief updates on past and upcoming meeting and events, we will discuss the status of research projects and initiatives that are ongoing including the status of several new projects/programs that are about to begin.  Once we have concluded this portion of our meeting, we are going to take a break. (around 2 PM)

After the break, we will have our third ‘Share n Care’ program that will be a time for everyone to share anything that has helped improve the quality of their life and or care through the years. We encourage attendees to bring items that they can talk about and share with all our members.

After our “Share-n-Care’ , we will take another short break. (around 2:45 PM – 3 PM) Following our 2nd break, we will have plenty of time for our general session to discuss any topics our members wish to engage in.

Our meetings are a wonderful opportunity to not only learn more about what is going on in the medical and research community but to also meet and talk, share experiences and support one another.

Please RSVP if you are planning to attend to wsalmgcdjm@comcast.net. Also, don’t hesitate to contact us with any questions.

jan17

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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

jan17

 

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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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flyer

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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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July16

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. 

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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