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 IT. Ellen.firstname.lastname@example.org
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/
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 email@example.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 firstname.lastname@example.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/
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.
- 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
- 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!
- 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
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 email@example.com or firstname.lastname@example.org
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 email@example.com 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
February Meeting 2/9/19 – This month we will be doing something different! We will be having our first online meeting on 2/9/19 at 2pm with Guest Speaker Ellen Lenox Smith who will be doing a presentation
‘How I have Improved my Life with EDS’
Ellen Lenox Smith has emerged as a leading voice for patients living with pain in RI. Mrs. Smith brings a reasoned and compassionate perspective to the need for safe patient access to medicine. She was a former middle school 8th grade Social Studies teacher, master swimmer, and high school swim coach. Ellen suffers from two rare conditions. Ehlers-Danlos Syndrome and Sarcoidosis, which causes enlarged lymph nodes and granulomas in her lungs. Both these conditions are currently not curable.
Ellen is co-director for Cannabis Advocacy for the US Pain Foundation, is on the board of both the US Pain Foundation and the Rhode Island Patient Advocacy Coalition (RIPAC) as media coordinator. She has been appointed by the governor to the ATEL Program, (Adaptive Telephone Equipment Loan Program), is appointed on the Oversight Committee for medical cannabis program and helps with media exposure for the RI EDS Support group. She was a staff writer for Pain News Network and today writes for National Pain Report and1000 Watts Magazine and along with her husband, speaks out to educate others about her condition and pain management. She is also the author of two books: It Hurts Like Hell!: I Live With Pain– And Have A Good Life Anyway and My Life as a Service Dog. 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 45 years!
How to join the meeting
- Click here: https://riedssupportgroup.my.webex.com/riedssupportgroup.my/j.php?MTID=ma2b6e6149f164023d42e4bdef432df9e
- Enter your name and email
- click Join meeting
- Enter password if prompted: rieds
- Select audio and video options (unselect your web camera from the drop down if you do not wish to be seen)
- Click Connect audio or Connect audio and start video
- Or join by phone: +1-510-338-9438 Access code: 621 622 532
Our next meeting at the Warwick Public Library will be on April 6th 2019 from 2pm to 4:30pm Topic is TBA. I should have an update/location/date for our March meeting in the next couple weeks.
The library is fully booked for March, if you have an idea for a group meeting topic or place email Krista@rieds.org
Have questions for Ellen but unable to make the meeting? Feel free to email her! firstname.lastname@example.org
Our Group Anniversary Party celebrating 6 years together will be on May 11th 2019 at the Warwick Public Library in the Large Meeting room. I’m looking for donations for our raffle to help pay for our party and group expenses, please let me know if you can help! We are also looking for food and drink donations for the party.
Have you ever organized an awareness walk? Are you interested in volunteering for the group and setting up an awareness walk or other awareness event this May/Summer? We would love to have you join us! We are looking for someone to help keep our social media accounts up to date, it would be very little work just a couple minutes a week! We will also need help getting awareness materials printed for our awareness events for anyone looking for ways to help out.
We will be heading back to the RI State House in May for another Awareness Day after we had such great success last year, date TBA.
For those of you in school, especially High School/College, consider setting up an awareness table or poster for May. If you need posters let me know and I will get them printed for you, EDS Cares has some wonderful and informative posters. https://www.ehlersdanlosnetwork.org/
Do you work or have connections in a local hospital/urgent care/walk-in or medical building? We could really use your help getting permission to set up posters/awareness tables in these locations!
Other ideas for raising awareness in May (and every day!) – Get a magnet/bumper sticker for your car, Use a washable car marker and make your car a travelling EDS awareness billboard. Pick up some awareness T-shirts! Feeling Creative? Design your own awareness shirt for the group and we will help you advertise it! Another idea is to set up social media posts on twitter, facebook, Instagram etc.to share a post each day in May with information about EDS and Connective Tissue Disorders/Comorbidities.
In past years we have had members get a human interest story published in the paper or local magazine.
A few places to try:
The Providence Journal
The Valley Breeze-Cumberland/Lincoln Edition.
The Newport Daily News
The Rhode Island Echo
The Valley Breeze-North Smithfield/Woonsocket/Blackstone
The Valley Breeze & Observer
The Warwick Beacon
Let us know what you’ll be doing for May! Have a great way of raising awareness for EDS and other connective tissue disorders this May/year? Share with us!