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
Zebra Hearts Foundation
We work closely with Zebra Hearts Foundation during the preparation of this race. They are a
group of family and friends that have loved ones who are living with rare diseases. Zebra Hearts
Foundation is focused on supporting and empowering other families like theirs by raising
awareness in hopes of early diagnoses and treatments. Their mission is to provide direct
assistance to people with under-supported, rare diseases to enable them to lead fuller lives.
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 get a housekeeper and some 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 her endless medical bills and supplies.
Meet some of the individuals suffering from EDS.