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   

Movie Screening – New Date 2.22.2020

Movie Screening:

Saturday, February 22nd, 2020 2pm to 5pm

Movie to start promptly at 2:20pm

North Providence Public Library

Community Room

1810 Mineral Spring Ave, North Providence Rhode Island 02904

Exclusive Q & A with Director, Producer,

Editor Karina Ulrike Sturm to follow!

NO PHOTOGRAPHY OR VIDEO OF THE MOVIE IS ALLOWED! This is a copyrighted film we have special permission from the creator to show, it is not to be shared without her express permission. To find out more about it go to (Scroll down for more information about the film)

We will have a snack table, everyone is welcome to bring a snack for themselves or to share, please be mindful of allergens.

Please do not wear or spray fragrance in the room. We have people attending with severe allergies who will have to leave if you spray, please be considerate of others.

Photo Booth Fun! We will have our photo booth set up again, this time the backdrop will be Hollywood Red Carpet, dress to impress or come in you most conformable pajamas!

The room will be open at 1:40 for those wanting to come early and get the best seats. If you have visual or auditory issues and need to reserve a seat in the front please Email


1:40 – Room Open/Snack Table set up/ Photo Booth

2pm-2:20pm – Come in and get settled

2:20: Movie Start Time

3:28- Movie Ends – 10 minute break

3:40- Q&A with Karina Strum

4:30 – Pack up/Clean up

We are inviting the Ehlers-Danlos community to an exclusive screening of the feature-length film ’We Are Visible,’ which shows a variety of people living with an invisible condition called Ehlers-Danlos syndrome all around the globe followed by a Q & A with the filmmaker.

 We Are Visible:

 The Ehlers-Danlos syndromes are a group of rare connective tissue disorders that can affect every part of the body.

We Are Visible wants to show the full picture of the condition including the complex presentation of symptoms, to the complications while searching for a diagnosis, over misdiagnoses and their harmful consequences, but also the daily challenges EDS patients face, and the differences in accessibility of care depending on the area they live at. My documentary focuses on the one thing that unites all patients: Their never-ending endurance to overcome those obstacles and to thrive. It conveys the hope and strength with which EDS patients fight for a better quality of life and care.

Dr. Rodney Grahame, who has worked with EDS patients for decades once said:

”No other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”

However, this fact is also the reason why EDS patients worldwide came closer together as a community. They are stepping up to raise awareness and knowledge about their condition, and We Are Visible is dedicated to explicitly support all of them.

EDS is an invisible illness, just like many other chronic conditions.

And this comes along with another common misconception. How can you be sick if you look perfectly fine? This film will show people of all ages (5 – 60 years old), with diverse backgrounds, different financial standing in different parts of the world that are all differently affected by this invisible condition. I hope that showing all those sides will resolve prejudices other people might have against Ehlers-Danlos syndrome.

EDS patients have to live with physical pain on a daily basis.

However, sometimes being belittled or judged, or not believed in can be worse than the physical pain. We Are Visible will show that EDS patients are some of the strongest-willed people despite their disabilities. While all EDS patients share the rare illness, they are still a variety of personalities and not defined by a chronic health condition. My film embraces these differences and shows how everyone copes in a different way.

 The contributors of this documentary live in different countries and states.

Therefore, EDS additionally appears in the context of other healthcare systems, which lead to new challenges. All single stories fit together as a whole and will be accompanied by expert opinions that give necessary background knowledge about EDS.

 Every one of my contributors is fighting for something:

For instance, for a better quality of life, for better treatment options, for their children, for awareness, or simply for survival. EDS patients are not victims; they are powerful individuals.

They are visible!

About the Filmmaker

Long Bio:

Karina grew up in Germany but currently lives in San Francisco, CA. After finishing school, she has worked in the medical field for eight years – most recently as a laboratory technician in a German research facility with a focus on biotechnology. In 2010, she developed symptoms related to Ehlers-Danlos syndrome and comorbid conditions and was unable to continue her research. She soon found her passion for writing and started to combine her medical knowledge with her personal experiences with disability and chronic illness. Her work focuses on medicine, science, chronic illness, and disability. 2018, Karina was accepted into a journalism program in Edinburgh, Scotland, and has been studying ever since. As part of her degree, she has worked with blind journalist Belo Cipriani and produced three accessible short films called ”Firsts” that feature writers with different disabilities. Additionally, she writes for an Austrian magazine for medical professionals with a focus on the patient’s perspective, and she has also written for international publications such as the Columbia Journalism Review. Besides journalism, Karina has a strong passion for all activities that involve being on or in the ocean. She loves traveling, dogs, facts, and Heavy Metal music, and hates lies, intolerance, and cooking. Karina’s film We Are Visible is a non-profit project and part of her MA thesis.

More information about Karina:


Trailer 1:

 Trailer 2:

 Trailer 3:

 Official Website: