September 8^th 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 18^th 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 26^th 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 28^th 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 12^th 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 23^rd 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 25-28^th Washington DC

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

Marfan Foundation Annual Conference July 9^th-12^th 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.

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