Author Archives: Krista

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

Winter/Spring News


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

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

Would you like to present at one of our meetings or know of someone who would like to and can benefit the group email krista@rieds.org or ellen.smith2@gmail.com

Have questions for Ellen but unable to make the meeting? Feel free to email her! ellen.smith2@gmail.com

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 Reminder

The Newport Daily News

The Rhode Island Echo

This Week

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!

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

January Meeting, Neurosurgical Updates: Clinical and Research Progress Made!

Special Guest Speakers: Dr. Petra Klinge and Dr. Abby McElroy 

Dr. Klinge is an internationally renowned neurosurgeon and professor of neurosurgery at The Warren Alpert School of Medicine at Brown University.  Dr. Klinge joined the Neurosurgical Faculty at Brown University in 2009 and is currently the Director of the Division of Pediatric Neurosurgery at Hasbro Children’s Hospital and the Director of the CSF Center of the Brain and Spine at Brown. Dr. Klinge’s scientific interests include the development of advanced techniques for diagnosis and treatment of dementia, hydrocephalus, and tethered spinal cord.  

Dr. Abby McElroy is a veterinarian with special interests in large animal models of Ehlers-Danlos syndromes and equine neurology. Her master’s thesis explored neurologic abnormalities in a naturally occurring equine model of Ehlers-Danlos syndrome, with a focus on occult tethered cord and myodural bridge dysfunction.  Dr. McElroy currently works as a postdoctoral research associate in the Rhode Island Hospital Department of Neurosurgery.

NEXT MEETING:

Saturday, January 5th 3-4:30pm

Warwick Public Library

Large Meeting Room

600 Sandy Lane Warwick, RI

Upcoming Fall Events

UPCOMING EVENTS

This months meeting is on September 15th

September is Pain Awareness Month and Chiari Malformation Awareness Month

    

On September 18th, a Tuesday, there will be a protest about the treatment of chronic pain patients. This will be at the State House,

September 22nd Connective Tissue Symposium in NH

https://www.connectivetissuesymposium.org/

In November Lara Bloom will be our Special Guest speaker. Our meeting this month will be in a different location and later than usual please read the flyer for more information! This meeting is on November 4th from 4pm to 6pm.