Category Archives: Uncategorized

Next Meeting March 12th

March 12th Meeting


This meeting will be ONLINE!​

Join by computer audio or by phone

+1-408-418-9388 Access code: 255 629 29648

Tethered Cord Talk with Ellen and Kerry:

March Meeting about Tethered Cord – This meeting will have two speakers, Ellen will start the meeting off with a talk about her experiences with Tethered Cord syndrome. Kerry will then share her experiences with tethered cord and dealing with a re-tether.​

There will be a Q&A portion after the talks and then we will open the meeting up to group discussion inviting our members to share their own experiences with Tethered Cord Syndrome.​

Members are encouraged to listen to the recording on our website from the group Tethered Cord Panel we did in 2016 ​

Online September Meeting



1-408-418-9388 Access code: 2558 547 6842

Join by phone or computer.

We will be having a group discussion, topics include –

September is Pain Awareness Month!

It is also Chiari Malformation Awareness month!

For Pain Awareness Month we will be talking about adaptive devices that make life easier with chronic illness

I’ll also be sharing a Flare-Up’s Action Plan worksheet.

This will be posted tonight for anyone looking to print it out before the meeting.

Would you like to share an adaptive device you love? Have a can opener that changed your life? Let us know! We’d love to hear what you are doing!

We Are Still Here!

2020 has been a difficult time for many of us. Due to the pandemic and closure of the libraries in RI we had to put our monthly in-person meetings on hold. Starting in September we will start having online meetings and details will be posted on the website as well as emailed to those on the email list and posted in our RI EDS Facebook page and group.

The meeting will be on September 12th. It will start at 1pm and go until 5pm. We will have an agenda, don’t feel you need to be on the call the entire time!


1pm – 1:30pm: Open Mic- Parents introductions/discussion

1:30- 2pm: Kids meeting – we will have an open mic for any kids and teens who want to pop on and introduce themselves. Time will be extended for 15 minutes if there is enough interest so that everyone that wants to gets a couple minutes (2-5 minutes I’m guessing but would love input from parents.) to introduce themselves and meet others like them. Parents let me know if your child/teen wants to attend so I have a better idea on the numbers. PLEASE NOTE THIS IS UNSUPERVISED TIME. PLEASE SUPERVISE YOUR CHILD. (I will be keeping an eye on things but I don’t know how to wrangle children. I’m much better with cats.)

2 – 2:15PM: BREAK (kids meeting run over time)

2:15 – 2:45pm: Open Mic – everyone hello/introductions starting with those who haven’t introduced themselves.

2:45 – 3:15pm: Favorite mobility or life tool/skill that you want to share with others (contact me if you would like to share). We use a program that if you want I can show your screen and whatever it is on video. Don’t worry I have plenty of things to share if no one else wants a go 😉

3:15-3:30 – BREAK

3:30 – 4:30pm: Tips on crisis management and preparing for emergencies and surgery during a pandemic. Speaker is Krista Brack after a short 20 minute talk the rest of the time will be open for others to share what tips they have and how they managed a recent crisis.

4:30-5pm: Open Mic/not moderated discussion – Talk and form friendships!

A flyer will be made this coming week. That is when I will send the emails out. Please share this with anyone you know that might benefit from this meeting.

To RSVP or if you’d like to share something at this or a future meeting please email Also if you sign up for our email list please add to your contacts, otherwise the messages may filtered as junk mail.


Rare Disease Day at the RI State House:

82 Smith St, Providence, RI 02903 Second Floor

Thursday, February 27, 2020 2:30– 4:30 PM (Set up meet in handicap parking lot at 2pm)

Tables with a couple of chairs will be set up on the second floor, one on the Senate side and one on the House side. The building is handicap accessible via the entrance through the parking lot on the left side facing the front of the state house. A limited number of handicap parking spaces are in this parking lot and some are located on the street surrounding the state house. Parking can be an issue, allow for time to park, car pool if possible. Carpooling can be set up via the Facebook event page or via email.

Free up to date awareness materials about Rare Diseases and the different local organizations helping our Rhode Island Rare Disease Community will be provided. Members and family members of the various groups will be on hand to talk about what living life with a Rare Disease or disorder is like for them.

To volunteer or have your organization represented contact  

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public and seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Clothing options are unlimited, the only request is that clothing is clean and neat, if possible please wear an awareness T-Shirt about the Rare Disease you are representing with comfortable jeans/pants/skirts.

Volunteers are required to register with Krista Brack prior to the event contact