Florence, WI | Saturday, May 20, 2023 at 10:00 AM CST
749 Central Ave, Florence, WI 54121
Run Like a Zebra for EDS was started by a group of family and friends
that have loved ones who are living with Ehlers-Danlos Syndrome.
Ehlers-Danlos syndrome is a group of inherited disorders that mostly affect the skin,
joints, and blood vessels. EDS is a rare syndrome - there are fewer than 200,000 US
cases per year.
Ehlers-Danlos syndrome affects connective tissue, primarily the skin, joints, and blood
vessel walls. Symptoms include overly flexible joints that can dislocate, and skin that's
translucent, elastic, and bruises easily. In some cases, there may be dilation and even
rupture of major blood vessels. Treatment helps manage symptoms and monitor for
complications. Options include drugs, physical therapy, and sometimes surgery.
For this event, Inclusion Fitness works in conjunction with Zebra Hearts Foundation to
help individuals with Ehlers-Danlos Syndrome. Run Like a Zebra for
EDS was started by a group of family and friends that have loved
ones who are living with EDS. The aim is to support and empower
families by raising awareness in hopes of early diagnoses and
EDS of Wisconsin
We work closely with EDS of Wisconsin during the preparation of this race. They provide guidance,
supplies, and time to make this event happen. EDS of Wisconsin’s mission is to provide support
and resources to patients and medical professionals affected by Ehlers-Danlos Syndromes and
related conditions via education and research. Their vision is to make a better world where EDS
and related conditions are fully understood, treated and supported.
Shyla grew up in Crystal Falls, Michigan. She then moved to
Marquette to get her degree from Northern Michigan
University. She is currently 22 years old and resides in
Carbondale, IL where she is pursuing her masters degree.
Shyla’s EDS has progressed severely - some days she might
dislocate or sublux 6-10 joints - on a bad day, she might have
20 dislocations. She is unable to walk without a mobility aid.
Before Shyla showed many EDS symptoms, she was a dancer
and a gymnast. EDS took that away from her.
Shyla is hoping to purchase a foldable mobility scooter and a
housekeeper, and other mobility devices from the money
raised from the race.
April is 16 years old and lives with her parents and brother in
Roscoe, IL. April has had a very rough coule of years. She has been
unable to attend school for the past 2 school years because of the
severity of her EDS symptoms. Her parents struggle daily to help
take care of her and to pay for all her medical and daily needs.
Before April showed many EDS symptoms, she was a gymnast and a
dancer. EDS took that away from her.
April’s family is hoping to get funds to help with her daily needs such
as her special dietary needs, medical therapies not covered by
insurance, home nurse and housekeeper, and her endless medical
bills and supplies.
Meet some of the individuals suffering from EDS.