About Us

What We Do

  • Host fundraisers and sell merchandise to raise money for education, prevention, treatment, and research of various invisible illnesses including, but not limited to, Ehlers-Danlos Syndrome, Dysautonomia, and Vasculitis.
  • Work to build a community of people who care about eradicating various chronic, invisible illnesses.
  • Inspire and provide hope to people who live with chronic, invisible illnesses by sharing personal stories about living with chronic illnesses through print and public speaking engagements.

How It Began

Life as a Zebra Foundation began with a website after sisters, Katie Dama Jaskolski and Allie Dama became sick with their own chronic, rare, invisible illnesses. They began sharing their stories about redefining their lives and learning to live with their new realities.  The website grew and Katie and Allie decided to make it their goal to raise money for Ehlers-Danlos National Foundation (EDNF), National Dysautonomia Research Foundation (NDRF), and Vasculitis Foundation (VF), while highlighting the importance of raising awareness for illnesses that are not visible to the outside world.

Accomplishments

  • Life as a Zebra Foundation became a domestic, nonprofit foundation on November 8, 2012. On September 29, 2013 the foundation received its official status as a 501(c)(3) organization.
  • Life as a Zebra Foundation hosted the second annual Invisible Illness Benefit on April 13, 2013.  The event raised over $26,000 for Ehlers-Danlos National Foundation, National Dysautonomia Research Foundation, and Vasculitis Foundation.  It attracted a lot of media attention for its charitable efforts.
  • Life as a Zebra Foundation hosted the first annual Invisible Illness Benefit on April 14, 2012.  The event raised $12,464.42 for Ehlers-Danlos National Foundation, National Dysautonomia Research Foundation, and Vasculitis Foundation.  It attracted a lot of media attention for its charitable efforts.
  • Life as a Zebra has been nominated multiple times for various health activist awards through WEGO Health including Best Blog, Health Activist Hero, and the Trailblazer Award.
  • Katie Dama Jaskolski and Allie Dama, Co-Founders of the Life as a Zebra Foundation, hosted two awareness days at Wexford Montessori to educate children on the importance of understanding the definition of a medical zebra and an invisible illness.  They spoke publicly to staff, students, and parents about the importance of always being kind, and displaying empathy to others, because you never know what someone is going through.

Dysautonomia

Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions.

Ehlers-Danlos Syndrome

Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen.

Vasculitis

Vasculitis is a family of rare and chronic autoimmune diseases, all characterized by the inflammation of blood vessels. There are more than 15 different vasculitis diseases, all of which can affect people of various ages, races, and genders.