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.
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 Krista@rieds.org Also if you sign up for our email list please add Krista@rieds.org to your contacts, otherwise the messages may filtered as junk mail.
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
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.
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.
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 Krista@rieds.org
1810 Mineral Spring Ave,
North Providence Rhode Island 02904
Exclusive Q & A with
Editor Karina Ulrike Sturm to
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 https://we-are-visible-film.com/
(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 Krista@rieds.org
1:40 – Room Open/Snack Table
set up/ Photo Booth
2pm-2:20pm – Come in and get
2:20: Movie Start Time
3:28- Movie Ends – 10 minute
3:40- Q&A with Karina
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:
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
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
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
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
They are visible!
About the Filmmaker
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.