RARE Daily

Rare Leader: Amanda Couch, President, White Sutton Syndrome Foundation

September 10, 2020

The Basics
Name: Amanda Couch

Title: President

Organization: White Sutton Syndrome Foundation

Social Media Links:

Disease focus: White Sutton Syndrome (WHSUS) is a condition characterized by autism and developmental delay and/or intellectual disability, as well as a characteristic facial profile. Children may also have speech and language delay, motor difficulties, vision problems, hearing loss, seizures, gastrointestinal problems, obesity, anxiety, and attention problems. While there are some reports of it being passed from parent to child, WHSUS is typically a de novo genetic change, meaning it is most often a spontaneous change, rather than an inherited one. WHSUS may also be referred to as a POGZ mutation due to the location of the de novo change on the POGZ gene. Included below are a few reference sources recommended by our medical advisory board. If you know someone who’s been recently diagnosed, you can find more in-depth information about WHSUS here.

Headquarters: Broken Arrow, Oklahoma

How did you become involved in rare disease: Our son was born with the condition. We became involved with an informal Facebook group that a parent had started. It wasn’t known as White Sutton then. We were seeing our geneticist regularly in Oklahoma City and he kept prodding and poking me and saying, “In order for a rare disease to move forward, it really needs a foundation.” I had talked with other parents in the group about starting one, but I never knew how to move forward. It was a whole new territory for us. We finally took the jump and decided to start the foundation.

Previous career: Currently works as a behavioral therapist

Education: B.S. in special education from Liberty University and a master’s degree in applied behavioral analysis from Ball State University

The Organization
Organization’s mandate: We aim to build a community that will improve the quality of life for those diagnosed with White-Sutton syndrome and their families. We want to be able to educate others about this condition and to find and fund research to better understand its symptoms, treatments, and prognosis.

Organization’s strategy: We primarily support the community at the present and try to spread awareness so that others diagnosed with White Sutton can find our group. We have started to expand into supporting research by building and promoting a patient registry in cooperation with CoRDS. It starts with the patient registry and from there we can help get more research done. We’re a small organization. All of us on the board are volunteers. We don’t have any paid individuals.

Funding strategy: We are funded primarily through individual donations on our website, as well as through Facebook and Amazon Smile. We have been awarded several small grants as well.

What’s changing at your organization in the next year: We are trying to explore new funding opportunities. Individual donations are slim right now because of COVID and we had to cancel our first annual conference. We’re currently working on rescheduling the conference for 2021.

Management Style
Management philosophy: We’re a small organization. We don’t have employees that we manage, there’s just a board of trustees. Our philosophy is to help the people who have White-Sutton syndrome and their families. We want to be wise stewards of the funds that we’re given and help patients and their families reach their maximum potential. We’re not throwing money at silly things but trying to find ways that will help these individuals in real and meaningful ways like an iPad grant, large scale research, and eventually funding our own private research.

Guiding principles for running an effective organization: Listen, learn, plan, apply, and repeat.

Best way to keep your organization relevant: I’m continually listening to our community to find out its struggles and needs, and then educating them about how to best address those problems in real, tangible ways, whether through recent research, helping support behavior, or offering support if there’s a need. We have a private Facebook group for individual caretakers and individual people with White Sutton. That’s been a safe space where we can listen and provide support to our families.

Why people like working with you: I’m empathetic and driven. I try to stay creative, and I’m good at thinking outside the box.

Mentor: I have a friend in the rare disease world, and I love being able to call her and get information and support. Reed Sutton and other individuals on the medical advisory board have also mentored us.

On the Job
What inspires you: I love seeing the fruits of our labor positively impact the lives of individuals with White Sutton and their families. I love being able to see those baby steps turn into big victories. I sometimes think the general world forgets to celebrate those little steps and those little victories, but I’m watching this foundation grow one baby step at a time. Being able to impact lives is what inspires me.

What makes you hopeful: Continued medical advances make me hopeful and the amazing group of board members that we have that have helped form and guide this foundation.

Best organization decision: Starting to fundraise on Facebook. That has been a huge blessing for our foundation.

Hardest lesson learned: The hardest lesson is that some individuals are resistant to diagnosis and it takes each of us time to come to grips with it. So, we try to help those individuals cope with the news at their own pace.

Toughest organization decision: The toughest organization decision was to start the foundation. We are such a rare disease that we had just a handful of people in our group. We didn’t know where to start.

Biggest missed opportunity: We are small, and we had to wait a long time to get our 501C3 because we were working back and forth with attorneys. It takes time to get things started, so it’s possible that during that time we missed opportunities.

Like best about the job: I love the kids. I love seeing new faces on our family page. I love when parents post about small victories in their lives. I love that we can be a community—a family to support each other when there are hard times like individuals in the hospital or who are struggling with episodes. We’re there for them. We’ve been there too. Before 2015, we didn’t even have a community. We were all alone navigating this unknown. And now we even sometimes say, “Hey, your brother so-and-so is dealing with this.” It feels like we’re having a close connection. And I love that.

Like least about the job: Not being able to provide more and meet everybody’s needs right now. There’s a lot of things we have faith that we’ll be able to provide in the future – things that we would love to do now but have to wait for until we have funding. Right now, due to being so small, we have limitations. That’s hard to accept sometimes.

Pet peeve: Individuals second-guessing the foundation’s motives. We are here solely to serve this community and yet some have implied that we have other motives. Nothing could be further from the truth.

First choice for a new career: Rare disease research scientist

Personal Taste
Most influential book: The Bible

Favorite movie: This is kind of cheesy, but Cinderella by far. I love that no matter what Cinderella went through, she was brave and took chances. She did not let her setback stop her and she never stopped dreaming or believing in herself. And she was always kind, and I know this world could use a lot more kindness.

Favorite music: Christian music and a capella music. I do like some country music since moving to Oklahoma.

Favorite food: Seafood

Guilty pleasure: Coffee

Favorite way to spend free time: I love spending time with my family on the lake boating and getting out and trying new adventures with them. I like spending time in nature with my family.


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