Rare Leader: Taylor Gurganus, Chair and Co-Founder, Bohring-Opitz Syndrome Foundation

The Basics
Name: Taylor Gurganus

Title: Chair and co-founder

Organization: Bohring-Opitz Syndrome Foundation

Disease focus: Bohring-Opitz Syndrome is an extremely rare genetic syndrome. There are fewer than 100 cases in the world. This syndrome is diagnosed by genetic testing and is caused by a mutation in the ASXL1 gene. The leading cause of death is respiratory infections. Children with BOS can have feeding difficulties, recurring respiratory infections, sleep apnea, developmental delay, failure to thrive, abnormal hair density and length, Wilm’s Tumors, brain abnormalities, silent aspiration, and other manifestations.

Headquarters: Orlando, Florida

How did you become involved in rare disease: My daughter Talynn was born in 2014. When she was born, we weren’t sure what was wrong with her. She wasn’t breathing, and she had to be rushed to Children’s Hospital of the King’s Daughters in Norfolk, Virginia. She spent three-and-a-half weeks in the NICU. Even though we had genetic testing there, everything came back fine, so they sent us home. We continued on this path of constant hospitalizations, respiratory issues, not gaining weight as she should, and not meeting milestones. The geneticist at Children’s Hospital told us she thought Talynn had Bohring-Optiz Syndrome and did whole exome sequencing to look for that gene mutation and a sister gene mutation. It came back 13 days before her first birthday in 2015 that Talynn had BOS. When Talynn was diagnosed, there was a support group, however there was no awareness day, no colors for this syndrome, and no ribbon. I felt the children and families of BOS deserved this recognition. My personality is to help as many people as I can and I was driven to help all the families and individuals with BOS support and care for one another as a team. I wanted to collaborate with the support group, therefore I contacted them to see if they had any input on the colors. We went with gold because our kids love shiny objects. We chose denim for rare diseases. For the awareness day we used the day the organization was established.

Previous career: I was a high school math teacher. I am now doing community-based for rehab for early intervention.

Education: I have bachelor of science degree in elementary education with an add-on in middle school mathematics from East Carolina University.

The Organization
Organization’s mandate: To create the best life for all families living with BOS

Organization’s strategy: To help families of patients affected by BOS through our family assistance programs. These include supporting research that increases the medical community’s knowledge about BOS and its best treatments, teaching and sharing knowledge about BOS and its best practices and treatments, and increasing a sense of community surrounding BOS.

Funding strategy: We do two fundraisers a year. One is an annual t-shirt sale we do. The other is a sale of ornaments, which we do at the end of the year. We’re still working to improve our funding strategy. We recently opened a BOS store on our website. We receive a lot of our donations from families raising money through various events on Facebook, but we’re trying to improve this.

What’s changing at your organization in the next year: We’re shifting from being a long-term research and patient support organization to solely being a patient-support organization. We plan to help provide support through financial assistant programs, our annual meet-up, and sharing knowledge and best practices. Recently another nonprofit has started, and they are focusing on research for our syndrome and two other related syndromes. We do not want to create a competition as we plan to collaborate with one another as independent foundations and specialize in our separate missions. Our overall goal is always to help all our kids.

Management Style
Management philosophy: We value helping others, meaningful work, relationships, integrity, and education.

Guiding principles for running an effective organization: We have learned to keep it simple, especially since we are running a small and volunteer-only organization. We have remained a close-knit community over the years with compassionate, genuine, and welcoming members. This is our BOS family.

Best way to keep your organization relevant: We stay relevant by always looking back on our mission and making sure we are supporting the patients in the best way possible.

Why people like working for you: I’m passionate, dedicated, loyal, and I’m very honest. People always know where I stand and what I think about what’s going on. I take the time to get to know the families and continuously work hard to provide the best for the community.

Mentor: The other co-founder, Carrie Hunsucker, is my mentor. She has helped guide me. She used to be chair but had to take a step back because of her daughter’s health. We have different personalities that work well together. She’s always there to help however she can, even if she’s stepped back.

On the Job
What inspires you: My daughter Talynn and all her BOS brothers and sisters.

What makes you hopeful: Knowing that I can help the other children receive a diagnosis. Since starting the organization, I’ve been able to help diagnose two children through social media. That means a ton to me. Who knows if they ever would have asked their doctor about this random rare disease if it wasn’t for me reaching out to them and saying I think your child might have what my daughter has.

Best organization decision: Revising our mission and giving this new goal all of our energy and allowing the other nonprofit to specialize in its mission without repetition of research from two foundations.

Hardest lesson learned: The hardest lesson learned has been that I can’t do it all. I cannot work full-time, be a full-time mother and a full-time wife, and make sure I dedicate all my time to this foundation. It’s hard for me to say “no.”

Toughest organization decision: The toughest decision is kind of the same as the best decision. Before we made that decision, it was hard knowing that our nonprofit started with the focus of both research and patient support. Carrie focused on the research and I focused on the patient support. To let that go was one of the hardest decision at the same time that it was the best decision.

Biggest missed opportunity: We haven’t been established that long, so I don’t know that we’ve had a biggest missed opportunity yet. A lot of our concerns and issues are because it’s hard to find volunteers and time. All the people who volunteer are either a parent or sibling of these children and trying to take care of a child with BOS in and of itself is a lot.

Like best about the job: What I like best is knowing that I’m helping the other children who are diagnosed.

Like least about the job: What I like least are the administrative tasks.

Pet peeve: Passive aggressive behavior and passive aggressive people. I’m a very honest and blunt person and I like to have that in return.

First choice for a new career: I would love to be a parent educational advocate. I would love to attend IEP meetings, medical appointments, and other meetings to help parents take a stand and make sure that their child is getting the best, but realistic, treatment possible.

Personal Taste
Most influential book: I don’t read books, I do have an app the Bible Verse of the Day. That is the most influential for me.

Favorite movie: I’m not a movie person.

Favorite music: Country and Christian music

Favorite food: I love chicken.

Favorite way to spend free time: I love to spend time with my daughters and husband, going to the beach and visiting family, including other BOS families.

August 2, 2018