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:

RI EDS/CTD Support Group Presents the ‘We Are Visible’ Rhode Island Premier Movie Screening

Saturday, January 18, 2020 2 pm to 5 pm

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!

Open to the Public

The room for this event will be open at 1:50pm for guests to come in and get settled. The movie will begin right at 2:20pm.

After the movie we will have a 15 minute break for people to use the facilities, get a snack or visit our Movie Premier Photo Station! .

Following the 15 minute break after the movie we will be joined via video chat with the Director, Producer, Editor Karina Ulrike Sturm for an exclusive Q&A.

A snack table will be set up with a variety of allergy friendly items. Guests are encouraged to bring a dish to share, an ingredient card will be required for all shareable snacks

Make sure to check out the Movie Photo Station where we will have a green screen and props set up for participants to get their photos taken as if they are at a Fancy Hollywood Premier.The photo station will be set up before the movie from 1:50 to 2:20 and again following the movie until approximately 4:45, it will be unavailable while the movie is being screened.

Photos will be uploaded to a website after the event and participants will have free access to them to save, download or print, no photo taken will be used outside of this event without the participants express written permission.

We would kindly like to remind our guests that many of our members have severe allergies and we ask that no fragrances be worn or used during the event.

We are limited to using a TV screen or video projector for this event and encourage anyone with visual impairments to email ahead of time to secure an area in the front.

This event is open to the public and we are trying to reach as many families in the area as we can that might benefit. Please share this event!

October Meeting

Join us for our October 12th 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”


Previously the Principal and Executive V.P. of Marketing for a 50-store retail chain in the U.S. with very strong skill sets in Marketing and Business Development, Sheryl McKanas is the inventor of the True Power Far Infrared Physiotherapy Tape. Her motivation is to help people of all ages fight against muscle and joint related injuries and discomfort.

After years of Research & Development, Thrive Tape has developed the most innovative Kinesiology Tape which has the added benefits of Far Infrared. THRIVE “Far Infrared” Kinesiology Tape is designed to support muscles and joints with the benefit of targeted pain relief*, assisting in recovery from common injuries*.

Thrive “Far Infrared” Kinesiology Tape is an elastic kinesiology tape made of a thin, elasticized 97% cotton and 3% spandex with an acrylic adhesive. It is latex-free, hypo-allergenic, and it is designed to be worn through any activity, showering, or just resting 24 hours a day for up to 2-3 days.

Nicole Toscano will also be onsite with her new business- Origami Owl is a direct sales company that provides custom jewelry, founded with a mission: to be a Force For Good™. Through the custom jewelry we share, we help people tell their stories, whether that’s capturing memories, celebrating life, inspiring goodwill or honoring loved ones.

All of this is done with the Original Living Locket that can be filled with charms, inscription plates, and Swarovski crystals, and finished with other jewelry accessories! As an Independent Designer for Origami Owl, I have the privilege of sharing high quality, competitively priced jewelry that not only has beauty, but more importantly, has meaning! I have the ability to learn about different people’s stories and help them tell those stories in their jewelry. I love being a part of the Origami Owl family and I can’t wait for others to join!

Fall Meetings

September 8th 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

September 18th 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 or 401-474-0115

September 26th 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 28th 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 12th 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 23rd RI EDS/CTD Awareness and Support Group Meeting 2pm-4:30pm Location: Warwick Public Library 600 Sandy Lane, Warwick RI


Rare Disease Week on Capital Hill – February 25-28th Washington DC

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

Marfan Foundation Annual Conference July 9th-12th Boston



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 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