Board Members
Aubrey Gillen
Chairperson
Hi! I’m Aubrey and I have had the pleasure of being part of this group as it has grown over the past 5 years. I am looking forward to working with patients, caregivers, and providers to build awareness for EDS in the Fresno & Clovis area!
I have hEDS, Dysautonomia, MCAS, & SVT. My 9 year old son has hEDS, Dysautonomia, and idiopathic ketotic hypoglycemia. I am an ambulatory wheelchair user, special education teacher, and mama to 4 kids.
My favorite comfort item is a 10ft wide giant fuzzy blanket!
Ellen Inouye
Vice Chair
Hi, my name is Ellen. My EDS diagnosis came in 2017. It was a huge relief to find and connect with other local Zebras when we started meeting in 2020. Being a part of this community as we have grown has been such a joy and I am excited to continue building our community and local support network.
I have EDS, ME/CFS, MCAS, and Autism. Winnie is my service dog and I am an ambulatory wheelchair user.
My favorite comfort items are my current crochet project, Body Braid, and iPad.
Staci Scheline
Treasurer
Hi, I’m Staci. I’m married to a firefighter and I have 2 kids, 1 boy (possible EDS) and 1 girl. I was diagnosed with hEDS in 2020 after seeing a post from a fellow Zebra and realizing that all my struggles were not normal.
I’m so happy to be part of this community. Having other people who understand us is so important for our mental health and I’m excited to be here so others don’t feel alone.
My comfort go-tos are books, puzzles, and my noodle pillow!
Sara Rodgers-Downs
Secretary
Hi, My name is Sara, and I have been apart of this group for a little over a year.
I am very excited to get more involved with this group and get to know everyone (now if I could just remember names that would be great). I have lived in Clovis my entire life, and I have been a small buisness for the last 16 years.
I have been diagnosed with Ehlers Danlos, Psoriatic Arthritis, OA, POTS, MCAS, Dysautonomia, Lupus and Fibromyalgia. I am an ambulatory wheelchair user. I have been married to my husband for 18 years and we have 2 adult children one of whom is married and blessed us with our first grand baby this year and a teenager. 2 out of 3 of our kiddos also have hEDS.
Myfavorite comfort item is my pillow with my pillowcase I made myself, and a good book.
OPEN POSITION
SOCIAL MEDIA & COMMUNICATIONS
Position Overview
The Social Media & Communications Coordinator will support the organization by helping manage online presence, community outreach, event promotion, and communication efforts. This role is ideal for someone who enjoys storytelling, advocacy, community engagement, graphic design, social media, or nonprofit communications.
Responsibilities
- Managing and updating social media platforms (Facebook, Instagram, etc.)
- Creating flyers, graphics, posts, and promotional materials
- Helping promote meetings, events, and fundraisers
- Assisting with newsletters, emails, and community announcements
- Sharing educational information and awareness content about EDS
- Helping increase visibility with local providers, organizations, and community partners
- Coordinating community outreach and communication efforts
- Capturing photos or highlights from events when available
Preferred Skills
- Strong written communication skills
- Familiarity with social media platforms
- Basic graphic design experience (Canva or similar programs helpful)
- Organized, reliable, and collaborative
- Passion for disability advocacy, chronic illness awareness, or community support
Time & Energy Commitment
Flexible volunteer position with primarily remote involvement. Estimated 2–5 hours per week, with additional opportunities during events or awareness campaigns.