October Meeting

Our next meeting is October 25th - RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886 We will be opening this meeting up to all disabled youth, please share it with those you know! We will have a guest speaker from a local university to discuss attending with a disability. Email Krista@rieds.org if you plan on attending.

Other Happenings in October:

October is Dysautonomia Awareness month! Here are a couple events going on locally:

October 4th – Dashing 4 Dysautonomia Insane Inflatable 5k Saturday, October 4 at 1:00pm UMass Dartmouth in Dartmouth, Massachusetts. Please help us kick off National Awareness Month by coming out to this event dressed in your turquoise and awareness shirts to cheer on our team and raise awareness. We will meet at 12 noon to cheer on the 12pm and 1pm group. We will likely meet for lunch after the race around 2:30pm at Buffalo Wild Wings at the Dartmouth Mall. 10-20% of purchases made that day between 11am-closing will be donated directly to DI. Be sure to inform your waitress to put your order under our “Dysautonomia International Fundraiser”. I will have fundraiser “tickets” to pass out at the race. Please join us and bring a friend! https://www.facebook.com/events/1446659265606581/

October 11thDysautonomia Diva’s Support Group meeting 2:00pm – 4:00pm Cardi’s Furniture- South Attleboro, MA Join us for our RI & MA Chapter meeting and celebrate Global Dysautonomia Awareness month! We will be sharing awareness packets and some other fun and easy ideas for the month of October. Light refreshments will be served. Awareness and DIva T-Shirts will be available to purchase and order. Our meeting will be held in Cardi’s Furniture community room on the 3rd floor in the back of the store. This location is handicap accessible and has an elevator at the front and back of the store. Please bring a friend and check out our new private meeting space which is right on the RI and MA line with plenty of Handicap and free parking

Also happening on October 4th:

RIPAC (Rhode Island Patient Advocacy Coalition) Medical Marijuana Festival

Saturday October 4th 11am-5:30pm Open to the public $5.00 admission

FOOD-MUSIC-GIVEAWAYS 498 Kinsley Ave, Providence RI

US Pain Foundation Pain Awareness Event

PAIN AWARENESS EVENT Sept 27 2014-1-page-001

September 27th - The US Pain Foundation’s Annual Pain Awareness Event at Miriam Hospital – 164 Summit Ave, Providence, RI 02906 (401) 793-2500 September 27th, 2014; 2-5PM

Hurvitz Board Conference Room. Guest Speaker – Stephen B. Corn, MD., is a board certified physician of Brigham and Women’s Hospital and Children’s Hospital, Boston, Massachusetts and an associate Professor at Harvard Medical School. He specializes in anesthesiology, pain and perioperative medicine. TOPIC: “Advances in Medical Marijuana Education” Inspirational Speakers: Brittany Desjardin – 2014, graduate of Cumberland High School, Attending New England College, NH; plans on a doctorate of pharmacy. Diagnosed with Ehlers Danlos Syndrome, Sept. 2013. Sally Gabb – this Dec. will mark five years of surviving of stage IV endometrial cancer; still working full time as a reading skills specialist for community college students and remains happy, productive and always with a ready smile! Guest speaker – JoAnne Leppanen, RIPAC “Educational Briefing on RIPAC and Medical Marijuana program in RI”, Panel of Medical Marijuana Patients, Some local support Group introductions, and Refreshments donated by Whole Foods. For More Information, contact: Ellen and Stu Smith/ call 401-474-0115 or Email: ellen.smith2@gmail.com www.uspainfoundation.org

September is Pain Awareness Month

It doesn’t look like we will get a meeting over the summer. We do have a meeting scheduled for Pain Awareness Month in September:

September 6th - RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886. September is pain awareness month; we will be discussing pain management options. Guest Speaker: Todd W. Ellison, MSW, LICSW, PARK VIEW COUNSELING, 430 Academy Avenue Providence, RI 02908 (401) 447-5952 will be giving a presentation: “Nurturing Healthy Relationships”.  Ellen recently heard him give this talk to the Arthritis group and was so impressed she asked him if he would speak with our group, we are so happy he said yes! Don’t miss it!

Also going on in September:

September 13th – 6th Annual New England Symposium-September 13-Best Western-Manchester, NH (10:00 am – 3:00 pm)Join us in New Hampshire on Saturday, September 13, for a one day educational symposium on Marfan syndrome and related connective tissue disorders. Drs. Hal Dietz, Thor Sundt, and Brad Tinkle are the keynote speakers this year. Topics include Marfan syndrome, Loeys-Dietz syndrome, Ehlers-Danlos syndrome, pain management, growing older with connective tissue disorders, preparing for surgery, applying for Social Security Disability, genetic testing, and more. Please mark your calendars. Registration coming soon. Cost:$35 per adult/$20 per child (6 to 17 years) before August 13, 2014. $40 per adult/$25 per child after August 13, 2014.Fee includes continental breakfast and snacks. Questions: Contact Rene Jones or Kaddy Ackroyd at coordinator@nhvtmarfan.org More Information: http://www.cvent.com/d/t4qd5p

September 27th - The US Pain Foundation’s Annual Pain Awareness Event at Miriam Hospital – 164 Summit Ave, Providence, RI 02906 (401) 793-2500 More information to follow, contact Ellen Smith with questions: ellen.smith2@gmail.com

If we do have a meeting I will send out an email and post here. If you want to get on the mailing list please email Krista: Krista@rieds.org

Questions? Email info@rieds.org

 

 

June Meeting Update

NEXT MEETING:

Warwick Public Library

Large Meeting Room

600 Sandy Lane Warwick, RI

Saturday June 7th 2pm-4pm

Guest Speaker: Jenn Walsh

Jenn Walsh grew up in Southern Rhode Island.  She traveled to Boston after high school where she earned her B.S. in Biology at Northeastern University and her M.S. in Genetic Counseling at Boston University. After 7 wonderful years in Boston she returned home to Rhode Island where she now works as a genetic counselor at Rhode Island Hospital, seeing pediatric and adult patients with a personal and/or family history of genetic conditions.  In her spare time Jenn enjoys cooking, hiking, and volunteering with the Special Olympics.

We had a great May Awareness Event at Miriam and would love to hear about what you’ve done to raise awareness this May, let us know if you would like to tell the group about any awareness activities you took part in.

Questions? Comments? Additions? Email Krista@rieds.org and if you have any pictures from our event at Miriam we would Love to see them!

Facebook group – https://www.facebook.com/groups/RIEDSSUPPORTGROUP/

Updates For MAY

We will be hosting an awareness event at Miriam Hospital on May 20th to the 23rd, here is some information on that:

Miriam Hospital is allowing us to set up a table in the hallway for four days in May, Tuesday through Friday. We will have the table and room for three people for May 20th- May23rd from 8am to 5pm. We will go over this in more detail at the meeting, anyone who is interested in signing up for a block of time at the table, email me with Hospital Table in the subject and in the body of the email let me know what day and what block of time you would like to do. The options for blocks of time will be as follows:

 

8am-12pm

8am-10am

10am-2pm

12pm-5pm

2pm-5pm

 

If you would rather come for a shorter period as a fill in for twenty minutes or an hour that would be wonderful also! Let me know what you’d like to do and we will see what we can do!

 

We now have a closed Facebook group, https://www.facebook.com/groups/RIEDSSUPPORTGROUP/ if you have any trouble getting in please email me, krista@rieds.org

Our next meeting is on MAY 10TH AT 10AM! Hope to see you there! Along with awareness activities, Ellen and Nicole will be giving a brief demonstration of their wonderful service dogs, Maggie and Watson.

CURRENT EVENTS

Our next two meetings are:

May 10thRI EDS Awareness/Support Group Meeting 10am-12pm Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886 MAY is EDS awareness month! Looking for ways to raise awareness in May? Come see what we will be doing!

June 7th – RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886. Jennifer Walsh will be giving a broad overview of the genetics of EDS during the first half of this meeting. Jennifer Walsh is a Genetic Counselor with Hasbro Children’s Hospital and Rhode Island Hospital.

And here are some other things happening in the area in the coming months. If you know of an event that should be listed please let me know email krista@rieds.org

May 4th - EDS NE/MA Support Group Meeting-May 4th- Jon Rodis at WSALMGCDJM@aol.com at Children’s Hospital-Waltham from 2 PM to 5 PM

May 10th – Marfan Foundation’s Walk for Victory- Salem, MA 12 noon- Salem Willows Park
Salem, Massachusetts contact- Kerri Cavanagh 516-883-8712 ext.138 kcavanagh@marfan.org

May 17th - Diva’s Day Out – The Mindz Eye- 11 Airport Road Warwick, RI – Join the Dysautonomia Diva’s for a day of rejuvenation, workshops, meditation class, lunch and two Diva Services of your choice! Tickets are $99.00 until May 10th, $119.00 after. Contact Amanda 401-573-2621 or email Dysautonomiadiva@hotmail.com

June 7th – RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library -Large Meeting Room, 600 Sandy Lane Warwick, RI 02886. Jennifer Walsh will be giving a broad overview of the genetics of EDS during the first half of this meeting. Jennifer Walsh is a Genetic Counselor with Hasbro Children’s Hospital and Rhode Island Hospital.

July 10th-12thEDNF 2014 Learning Conference –It will be held this year at the Hilton Americas Hotel in Houston Texas. Registration is now open – www.ednf.org

July 10th-13thMarfan Foundation Conference in Baltimore, MD – It will be hosted by Johns Hopkins Hospital

July 11th-14th – 2014 Dysautonomia International Conference & Lobby Day Hyatt at Dulles International Airport in Herndon, Virginia, just outside of Washington, D.C. Registration for the conference is $175 per person before May 1, 2014 and $200 thereafter. Registration includes participation in all seminars, presentations, social activities, lunch on Saturday and Sunday, and a Saturday night Awards Dinner. Bus transportation to and from Capitol Hill for Monday’s Lobby Day is also included. Seating is limited, and registration will be accepted on a first come, first serve basis. The 2013 conference sold out well in advance, so we recommend registering early.

July 17th-19th – The Center for Ehlers Danlos Syndrome Alliance (CEDSA) ‘Matrix of EDS’ conference is being held in Grand Rapids Michigan. It will be at the Amway Grand Plaza Hotel.

 

September 13th6th Annual New England Symposium-September   13-Elliot Hospital-1 Elliot Way-Manchester, NH (10:00 am – 3:00 pm) Join us in New Hampshire on Saturday, September 13,   for a one day educational symposium on Marfan syndrome and related connective   tissue disorders. Drs. Hal Dietz, Thor Sundt, and Brad Tinkle are the keynote   speakers this year. Topics include Marfan syndrome, Loeys-Dietz syndrome,   Ehlers-Danlos syndrome, pain management, growing older with connective tissue   disorders, preparing for surgery, applying for Social Security Disability,   genetic testing, and more. Please mark your calendars. Registration coming   soon. Cost:$35 per adult/$20 per child (6 to 17 years) before August   13, 2014. $40 per adult/$25 per child after August 13, 2014.Fee includes   continental breakfast and snacks. Questions: Contact Rene Jones or   Kaddy Ackroyd at coordinator@nhvtmarfan.org

April Meeting

Our next meeting is April 12th

RI EDS Awareness/Support Group Meeting 2pm-4:00pm – Warwick Public Library

Large Meeting Room, 600 Sandy Lane Warwick, RI 02886.

Eric Palmer owner of PTI, Pedorthic Technologies, Inc will be giving a presentation during the first half of this meeting.
‘A native Rhode Islander, PTI owner Eric Palmer has more than twenty years of experience evaluating, fabricating, and fitting his patients with all types of custom-made orthotics and bracing.
Eric enjoys helping his patients remain independent by providing quality products and services that enable them to maintain their normal routine.’

The second half of the meeting will be to talk about May Awareness, our plans for May and what we are doing as a group into the summer. Don’t forget if you want to order an awareness T-Shirt let me know BEFORE April 5th!

I have a NEW EMAIL KRISTA@RIEDS.ORG if you would like to be added to the update list let me know. Thank you!

March Meeting

Warwick Public Library

Large Meeting Room

600 Sandy Lane Warwick, RI

Saturday  March 29th 2pm-4:30pm

Kevin Muldowney, owner of Muldowney Physical Therapy, will be presenting about the sacroiliac joint dysfunction commonly found with EDS patients. Kevin Muldowney is excellent in the treatment of mid back pain.  He uses a technique called muscle energy to assist in aligning the vertebrae in your mid back.  He gives his patients specific exercises to help correct their posture and strength, helping to ease your pain in time.

October Meeting

Our next meeting will be held on Oct. 26th at 1:30 pm – 3:30pm

Warwick Public Library,

600 Sandy Lane Warwick, RI

We will have a guest speaker starting at 2pm

Dr. Marcy Feibelman, Naturopathic Physician
Leaves of Change Natural Medicine

 

September Meeting!

The next support group meeting will be on September 7th at 1:00pm to 3:30pm at the Warwick Public Library, Small Meeting Room, 600 Sandy Lane Warwick, RI.

We will be going over information gathered during the EDNF Conference that was just held in Providence. We hope you can make it! I’m sorry I haven’t been putting up the meeting minutes on here, I know many of us aren’t always able to get to the meetings. If you have some web site knowhow or are willing to learn and would like to help please let us know!

There will also be a Pain Awareness Event on September 21st, 2-4pm at Miriam Hospital, Hurvitz Board Conference Room. This event is being put on by the US Pain Foundation.

Guest Speakers- George Pasquarollo, DO, FAAO “Prolotherapy and Platelet Rich Plasma”

JoAnne Leppanen RIPAC, Educational Briefing on RIPAC and Medical Marijuana Program in RI

Inspirational Speakers: Nicole Toscano and Bonnie Cunningham

Panel of Medical Marijuana Patients

TCAPP (The Coalition Against Pediatric Pain) and The RI Ehlers Danlos Support Group will also be at the event

Refreshments donated by Whole Foods

For more information about the US Pain Event please contact Ellen Smith 401-474-0115 or email ellen.smith2@gmail.com

For more information about the upcoming EDS support group meeting contact Diane at lovey529@cox.net, or Krista at kristalynn1977@hotmail.com