MEETING THIS SATURDAY JUNE 17TH

Guest Speaker Ellen Lenox Smith: Cannabis and Ehlers Danlos Syndrome

This weekend only! Ellen will be giving  a special preview of her presentation for this summers conference, if you won’t be able to travel out of state now if the time to see it!

Mrs. Ellen Lenox Smith has emerged as a leading voice for patients living with pain in Rhode Island. Featured in local and national press, Mrs. Smith brings a reasoned and compassionate perspective to the need for safe access to medicine. This year, she spoke at the ASA Unity Conference on this topic of access to proper and affordable treatment and medication. Mrs. Smith has been featured in NY Times, Washington Post, NPRI local, national, the front page of the Providence Journal twice, and more. Mrs. Smith is also an author It Hurts Like Hell!: I Live With Pain– And Have A Good Life Anyway and My Life as a Service Dog.

Mrs. Smith suffers from two rare conditions. One is Ehlers-Danlos Syndrome. In 2006, she was accepted into the Connective Tissue Research at the National Institute of Health to help search a cure for Ehlers-Danlos Syndrome. Her second condition is called Sarcoidosis, which causes enlarged lymph nodes and granulomas in her lungs. Both these conditions are currently not curable. She presently has endured twenty- three surgeries and countless visits to her doctors.

Presently, Mrs. Smith is a Rhode Island ambassador for both the US Pain Foundation, on the board of both the US Pain Foundation and the Rhode Island Patient Advocacy Coalition (RIPAC) as media coordinator, and helps with media exposure for the five-year-old EDS RI Support group. She is a staff writer for both Pain News Network and 1000 Watts. Mrs. Smith is a resident on a small farm in Scituate, Rhode Island with her husband, Stuart (and her Service Dog Maggie) Ellen and Stuart have been married for 42 years! They are proud parents of four adult children and three grandsons, with another Grandchild on the way!

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Event Happening Sunday June 11th

The Boston Walk for Victory is happening this Sunday! (June 11) We at RI EDS will be walking as part of Team Zebra. We have participated in the walk every year so far and are so happy to do it again, especially because this year all the money raised by Team Zebra will go directly to EDS research! We all know how much we need more research and more awareness so help me spread the word about the walk, join us if you can and if possible make a small donation or encourage your friends, family or community to do so. Research is imperative for us to live better, less painful lives and we are so much stronger together! You can register for the walk online until June 9th but will still be able to register in person on the day!

The Marfan Foundation works to create a brighter future for everyone living with Marfan syndrome and related disorders. This includes funding research, providing patient support, and conducting public and medical education to ensure that everyone affected is diagnosed and treated. The Walk for Victory helps fund our life-saving programs and services.

Join us for our 3rd Annual Boston Walk for Victory and help us raise awareness and advance our life-saving work. This nationwide walk program focuses on community and puts the FUN in fundraising! Grab a friend, join a team, or make your own team and get ready for some fun in the sun.

Welcome to the home of Team Zebra! (Intro from Kathleen Kane)
Ehlers-Danlos Syndrome is an incurable, heterogeneous, genetic disorder, resulting in weak connective tissue, (the tissue that makes up skin, bones, blood vessels and other organs). EDS often has early signs and progressive degradation, currently organized in a group of six distinct types that are diagnosed by characteristics, clinical observation, and/or genetic testing. The overall prevalence of Ehlers-Danlos Syndrome is estimated as 1 in 5,000 individuals.   My husband Jon, who is the Co-leder of the EDS New England/Massachusetts Support Group and also is the President of the Massachusetts Chapter of the Marfan Foundation, works closely with several EDS support groups and organizations here in New England and throughout the United States to provide support, promote awareness and initiate needed research in improving the quality of life for all individuals and families dealing with a connective tissue disorder.

I am very happy to be a part of Team Zebra and I look forward to walking with EDSrs from all over New England as part of the Marfan Foundation’s Walk For Victory.  We want to thank the Marfan Foundation for giving us this opportunity to raise much needed awareness of EDS. Please come and join us on June 11th to help raise awareness of Ehlers-Danlos Syndrome, Marfan Syndrome, Loeys-Dietz Syndrome and other related disorders.  To quote my husband Jon, “Together we are indeed strong and connected!”

NEW THIS YEARWe are pleased to announce that ALL $ raised through Team Zebra will go directly to support EDS Research.

WANT TO HELP?
Support The Marfan Foundation by making a donation to our team. The process is fast, easy, and secure. And you can be sure that it will benefit a great cause!

Thank you for your support!

LINKS:

Team Zebra: https://give.marfan.org/fundraise/team?ftid=114446 use this link to join our team, please also share the link and walk information with your social groups!

Boston Walk Main Page: https://give.marfan.org/boston/events/2017-boston-walk-for-victory/e116520 Have Marfan or one of the other connective tissue disorders? You can join a team or register as an individual!

More information about the walk:

Registration & Check-in: 12:00pm

Walk Begins: 12:30pm

Benefits for Walkers:

Enjoy a mile-long leisurely walk and connect with others in your community.

Your own personal and team fundraising webpage

Snacks, games, and prizes!

Satisfaction in knowing that you are helping to save lives and improve the quality of life for the many thousands of individuals and families living with Marfan syndrome and related disorders.

Additional Details:

Raise or Donate $100 to receive our 3rd year purple shirt at the walk!

  • Raise $150 to win a ticket to Marfan Awareness Day with the Boston Red Sox
  • Raise $1,000 to receive a Limited Edition Top Fundraiser hat and cinch bag
  • Raise $5,000 as a Team and receive an official Team Tent on the day of the Walk

Raise $1,000 or more by Walk Day and you will be a part of our National Superstar Circle of Excellence. You will recieve VIP treatment at the walk, as well as recognition at our Annual Family Conference in Minnesota!

For more information on Marfan Syndrome and related disorders, visit marfan.org.

Thanks so much and I hope to see you there!

Krista Brack RI EDS Group Leader

krista@rieds.org

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MAY MEETING AND UPDATES

OUR NEXT MEETING IS THIS SATURDAY!

Our June meeting will be held on June 17th 2pm-4pm at the Warwick Public Library in the Large room!

Please join us for the annual Marfan Foundation Boston Walk for Victory on June 11th at Boston Common. Join us on the walk (we are Team Zebra!) or just come for a good time raising awareness and making some new friends. It is always a wonderful time!

JOIN TEAM ZEBRA: https://give.marfan.org/checkout/register?eid=116520&ftid=114446

INFORMATION ON THE EVENT: https://www.marfan.org/get-involved/updates/events/2016/06/11/boston-walk-victory#.WSXWeGjythE

We have a couple of local business’s helping to raise awareness this May, please check out the ‘Zebra Milkshake’ at Tilly’s 

And some wonderful Zebra Prints at Lularoe Wayland Square !

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NEXT MEETING APRIL 29th

 

NEXT MEETING:
Saturday April 29th 2 pm- 4 pm
Cardi’s Furniture Community Room 999 Newport Ave (Rt. 1A)
2nd Floor (Elevator in back brings you closest to the room)
South Attleboro, MA 02703 (Exit 2B off of I-95)

We will be joining the Dysautonomia Support Network (DSN) for a joint meeting in April with special guest speaker Amanda Aikulola LPN, and Dysautonomia Support Network; President, Executive Director, and Founder. Amanda will be talking to us about Dysautonomia and adapting to life with chronic illness ending with a Q&A.

You can join the Facebook event page here: https://www.facebook.com/events/503923119995443/

 

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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:

nov16

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.

oct16remake

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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dsn

flyer

rarene

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