Our Board of Volunteers
President & Founder: Kimberly Czotter
Aug 2021 - present
She has a B.A. in Psychology, Nutritionist diploma, and has dreams of becoming a doctor with a focus on rare diseases. Kim founded the society following various health struggles and a lack of supportive health care providers. Fortunately, after a lot of research and self-advocacy - she has now focused on helping this not happen to other Zebras.
Her roles: creating the website, resource gathering, designing the research database, finding and reviewing studies, administration, training volunteers, being the point of contact, Instagram page, and more. So far she has invested a few thousand volunteer hours in the non-profit in hopes of it providing the resources every EDS patient with the co-morbids needs.
Vice-President: Colleen Egli
Sept 2021 - present
Colleen is an organizational development practitioner who loves connecting the dots and finding workable solutions. She is passionate about helping those with invisible diversity find the support and voice to feel included in the workplace. She currently leads a team and program at UBC, and is also a busy mom to two children. She primarily works on the logistics and idea development behind the non-profit. With her experience in the business sector, she is an asset to understanding different avenues for the EDS and Co. Society to explore.
Treasurer: Kate Ortwein
Dec 2021 - present
Kate has substantial experience in non-profit management, so has been an invaluable asset to understanding the administrative side and charity application process.
Secretary: Sarah Hall
Dec 2021 - present
Sarah is a first-year (2021-2022) university student studying Biological Life Science (similar to pre-med), under a Bachelor of Science. She has plans to become a Rare Disease Specialist after completing her undergrad and medical school in hopes of studying her own rare diseases. Her rare conditions include Complex Regional Pain Syndrome (CRPS), Ehlers Danlos Syndrome (EDS), as well as undiagnosed gastrointestinal issues (suspected Superior Mesenteric Artery Syndrome, and NutCracker Syndrome). Her favourite hobbies include making jewelry, ring splints, practicing American Sign Language, raising awareness on Instagram, and learning more about biology and medical conditions.
Our Social Media Volunteers
Adriana Diaz Crespo
Jan 2022 - present
She has graduated in Business Administration (Spain) and is currently studying Digital Marketing in Vancouver, BC. She hopes to
continue learning and growing in the Digital Marketing world. She also travels because she feels it adds to her experiences and helps her grow as a person. She joined our volunteer team to help spread our message as far as possible using her Digital Marketing knowledge. In her spare time, she likes sports (especially football), eating vegetarian food, music, comedy, and reading about social issues and current affairs.
Kristin Daley
Feb 2022 - present
Kristin is a huge helping hand in creating social media posts for our Instagram page on Mondays and Tuesdays. She is traditionally a teacher in Ontario, but since COVID-19 began she began her own Socacize Dance Classes. She suffers from PoTS and EDS herself, so her classes teach hypermobile bodies how to move safely! She also is a seamstress, vegan, mom, and animal advocate. She has two pups (Dodie and Penny Lane) and has an Instagram page for her three cute rats (Rosita, Savannah, and Esperanza)!
Our Research Volunteers
Michael Adams
