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.
Mineral Spring Ave, North Providence Rhode Island 02904
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 email@example.com ahead of time to secure an area in the front.
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.
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! https://nicoletoscano.origamiowl.com/
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
-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 firstname.lastname@example.org
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 email@example.com 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
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.
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
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!
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