Category Archives: Uncategorized

RI EDS/CTD Support Group Presents the ‘We Are Visible’ Rhode Island Premier Movie Screening

Saturday, January 18, 2020 2 pm to 5 pm

Movie to start promptly at 2:20pm

North Providence Public Library

Community Room

1810 Mineral Spring Ave, North Providence Rhode Island 02904

Exclusive Q & A with Director, Producer, Editor Karina Ulrike Sturm to follow!

Open to the Public

The room for this event will be open at 1:50pm for guests to come in and get settled. The movie will begin right at 2:20pm.

After the movie we will have a 15 minute break for people to use the facilities, get a snack or visit our Movie Premier Photo Station! .

Following the 15 minute break after the movie we will be joined via video chat with the Director, Producer, Editor Karina Ulrike Sturm for an exclusive Q&A.

A snack table will be set up with a variety of allergy friendly items. Guests are encouraged to bring a dish to share, an ingredient card will be required for all shareable snacks

Make sure to check out the Movie Photo Station where we will have a green screen and props set up for participants to get their photos taken as if they are at a Fancy Hollywood Premier.The photo station will be set up before the movie from 1:50 to 2:20 and again following the movie until approximately 4:45, it will be unavailable while the movie is being screened.

Photos will be uploaded to a website after the event and participants will have free access to them to save, download or print, no photo taken will be used outside of this event without the participants express written permission.

We would kindly like to remind our guests that many of our members have severe allergies and we ask that no fragrances be worn or used during the event.

We are limited to using a TV screen or video projector for this event and encourage anyone with visual impairments to email krista@rieds.org ahead of time to secure an area in the front.

This event is open to the public and we are trying to reach as many families in the area as we can that might benefit. Please share this event! https://www.facebook.com/events/586488382167592/

October Meeting

Join us for our October 12th Meeting 2pm-4:30pm Location: Warwick Public Library 600 Sandy Lane, Warwick RI Special Guest Speaker Sheryl McKanas, Founder and President of Thrive Tape “The Benefits of Using Far Infrared Kinesiology Tape”

PLEASE RSVP TO ELLEN IF YOU CAN MAKE ITEllen.smith2@gmail.com

Previously the Principal and Executive V.P. of Marketing for a 50-store retail chain in the U.S. with very strong skill sets in Marketing and Business Development, Sheryl McKanas is the inventor of the True Power Far Infrared Physiotherapy Tape. Her motivation is to help people of all ages fight against muscle and joint related injuries and discomfort.

After years of Research & Development, Thrive Tape has developed the most innovative Kinesiology Tape which has the added benefits of Far Infrared. THRIVE “Far Infrared” Kinesiology Tape is designed to support muscles and joints with the benefit of targeted pain relief*, assisting in recovery from common injuries*.

Thrive “Far Infrared” Kinesiology Tape is an elastic kinesiology tape made of a thin, elasticized 97% cotton and 3% spandex with an acrylic adhesive. It is latex-free, hypo-allergenic, and it is designed to be worn through any activity, showering, or just resting 24 hours a day for up to 2-3 days.

Nicole Toscano will also be onsite with her new business- Origami Owl is a direct sales company that provides custom jewelry, founded with a mission: to be a Force For Good™. Through the custom jewelry we share, we help people tell their stories, whether that’s capturing memories, celebrating life, inspiring goodwill or honoring loved ones.

All of this is done with the Original Living Locket that can be filled with charms, inscription plates, and Swarovski crystals, and finished with other jewelry accessories! As an Independent Designer for Origami Owl, I have the privilege of sharing high quality, competitively priced jewelry that not only has beauty, but more importantly, has meaning! I have the ability to learn about different people’s stories and help them tell those stories in their jewelry. I love being a part of the Origami Owl family and I can’t wait for others to join! https://nicoletoscano.origamiowl.com/

Fall Meetings

September 8th Ehlers-Danlos New England/Massachusetts Support Group and MA Joint Get Together
When: Sunday-September 8th -1 PM to 4 PM
Where: Children’s Hospital in Waltham-9 Hope Avenue-Deveber Conference Room-Lower Level
-On September 8th , we will hold a Joint Get Together of the Massachusetts Chapter of the Marfan Foundation and the Ehlers-Danlos and CTD New England/Massachusetts Support Group . 
It’s a purely social event for members of both groups as well as with representatives from our medical community who care for our members and/or are part of the Physician Awareness Committees for Marfan, EDS and related disorders. RSVP wsalmgcdjm@aol.com

September 18th The US Pain Foundation -U.S. PAIN AWARENESS MONTH EVENT FREE and OPEN TO THE PUBLIC North Providence Library
-Kathleen Muldowney, PT “What Are the Benefits of Manual Physical Therapy?”
-Sheryl McKanas, Founder and President of Thrive Tape “The Benefits of Using Far Infrared Kinesiology Tape”
-Ellen Lenox Smith, Co-Director of the Medical Cannabis Program for the U.S. Pain Foundation “Using Cannabis Without Smoking”
-Shaina Smith, Director of State Advocacy and Alliance Development for the U.S. Pain Foundation,”Getting Empowered Through the U.S. Pain Foundation”
Contact: Ellen at ellen@uspainfoundation.org or 401-474-0115

September 26th Social Meet-Up At Not Your Average Joe’s Warwick Location Time: 4pm to 8pm

Join us for a social meet up! We will be meeting at Not Your Average Joe’s in Warwick, 15% of our bill will go to the Marfan Massachusetts Chapter! No purchase necessary, if you are unable to eat or drink please feel free to join us for conversation! **Attendees are responsible for paying their bill***

September 28th RI EDS/CTD Awareness and Support Group Meeting 2pm-4:30pm Location: Warwick Public Library 600 Sandy Lane, Warwick RI Krista Brack will give a brief presentation on tips for the home and hobbies. Krista will also share tips for travelling and share resources for different traveling methods to help prepare for the Holidays.

October 12th RI EDS/CTD Awareness and Support Group Meeting 2pm-4:30pm Location: Warwick Public Library 600 Sandy Lane, Warwick RI Special Guest Speaker Sheryl McKanas, Founder and President of Thrive Tape “The Benefits of Using Far Infrared Kinesiology Tape”

November 23rd RI EDS/CTD Awareness and Support Group Meeting 2pm-4:30pm Location: Warwick Public Library 600 Sandy Lane, Warwick RI

SAVE THE DATE – CONFERENCE SEASON 2020

Rare Disease Week on Capital Hill – February 25-28th Washington DC

Ehlers Danlos Sociaety Annual Conference July 9th-12th Arizona

Marfan Foundation Annual Conference July 9th-12th Boston

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

VOLUNTEERS NEEDED

Hello everyone! I hope you are enjoying the summer. As we get ready to start our meetings back up again and as we move into another year I am looking for some assistance with the group.

  1. Social Media/Interactive Media Coordinator – 2-4 hours bi-weekly, update Facebook Page and Twitter with group information and other news/tips/fun stuff. If possible could expand to other platforms and take over website updates. Volunteer would need to understand social media platforms
  2. Online Meeting Coordinator – 2 meetings a year roughly 4-6 months apart. Volunteer would be responsible for setting up the online meeting, introducing the speaker or Leading the general discussion. Volunteer would also need to monitor meeting for questions and be present for Audio/Video issues. Volunteer should have experience with online meetings or be willing to learn. Ian can assist anyone interested in learning it is not difficult (hey I can do it 😉) Next Meeting will be in the winter, probably in February, plenty of time to learn how to use the program!
  3. Teen/Young Adult Engagement Coordinator – Engage with the teen/young adults in the group, keep rack of accomplishments like birthdays, graduations and surgery. Help with the planning and execution of an annual summer party to celebrate graduations and birthdays or other milestones.

If you are interested in volunteering please email Krista@rieds.org or contact me via Facebook or in person.Want to help in another way? Let me know! We are always looking for volunteers to help! We would love help with our facebook community, we are always interested in hearing about new speakers, whether they are local practitioners or other patients looking to share what has helped them on this journey. No job experience necessary 😊Thank you! Hope to hear you at our online meeting this week! Special Thursday meeting August 15th!Krista Brackkrista@rieds.org

Upcoming Events

May 17th 2019 EDS Leadership Conference | Where: 7440 Mason Montgomery Rd., Mason, Ohio.

The conference is free, but space is limited. If you can’t attend, sign up for the live stream! https://leadeds.com/live/ The mission of our EDS Leadership program is to train and support existing and potentially future leaders to help their members with managing EDS and related conditions.

May 21st RI EDS/CTD Awareness and Support Group Hosts AWARENESS DAY AT THE RI STATE HOUSE Join us and help raise awareness this May at our State House! We will have 2 tables set up with free awareness information and we need volunteers available to help us hand out information and talk to our legislators about what it is like living with a connective tissue disorder. You don’t need experience! Come join us for a fun day, materials will be provided.

June 1st 2019 Marfan Foundation’s Boston Walk For Victory • 12:00 pm – 3:00 pm

Boston Common – 139 Tremont Street, Boston, MA 02111 To join the EDS Team Zebra here is the link! https://give.marfan.org/team/223622 The Walk for Victory is The Marfan Foundation’s nationwide walk program held in various cities across the country to bring the Marfan syndrome and related disorders community together. The walks are non-athletic, family-oriented events that focus on fundraising and fun.

June 8th RI EDS/CTD Awareness and Support Group Meeting 2pm-4:30pm Fusion Patient Panel

A discussion with connective tissue disorder patients who have had neck fusion. Topics will be about patient experience with surgery and recovery and what process they went through preparing for surgery. Q and A and group discussion will follow.NO MEDICAL PROFESSIONALS WILL BE SPEAKING, THIS IS A NON MEDICAL PATIENT EXPERIENCE TALK. Contact Krista@rieds.org if you are interested in being on the panel.

June 9th Ehlers-Danlos New England/Massachusetts Support Group and MA Chapter Meeting

1 PM to 4 PM — Where: Children’s Hospital in Waltham-9 Hope Avenue-Deveber Conference Room-Lower Level Please RSVP if you are planning to attend to wsalmgcdjm@comcast.net or wsalmgcdjm@aol.com

June 15, 4th Annual CSF Disorders Symposium: From Canvas to Clinic – Artistic Management of Cerebrospinal Fluid Disorders Time: 7:30am to 5:00pm This conference is for medical professionals and will be held at the Warren Alpert Medical School in Providence. –RI EDS/CTD Awareness and Support Group will have an information/awareness table at this event, if you would like to volunteer please contact krista@rieds.org  For more information on the event https://csfinfo.org/event/6-15-19-brown/ PLEASE SHARE THIS WITH YOUR DOCTORS

July 10-14th  35th Annual Marfan Foundation Conference to be held in Houston, TX

July 24-27 ASAP Chiari & Syringomyelia Conference Philadelphia (Center City), Pennsylvania


July 26-28th Dysautonomia International 7th Annual Conference Loews Philadelphia Hotel, Pennsylvania

July 30 – August 1, 2019 EDS Global Learning Conference Nashville, TN