Rare Leader: Haley Oyler, President, SETBP1 Society

The Basics

Name: Haley Oyler

Title: President

Organization: SETBP1 Society

Social Media Links:

Disease focus: SETBP1 disorder is a rare genetic condition that causes a neurodevelopmental disorder. When the SETBP1 gene is mutated before birth, individuals have a higher risk of developmental delay, autism spectrum disorder, ADHD, cognitive delay, and speech and language disorders.

Headquarters: Austin, Texas

How did you become involved in rare disease: In early 2016, when my oldest son was diagnosed with SETBP1 disorder, the genetic condition did not have a name. No researchers were actively researching the condition and no organizations were dedicated to SETBP1. There were only a few documented cases of the condition. The catalyst for forming SETBP1 Society came from a conversation my husband and I had after we enrolled our son in the University of Washington TIGER study. After the study, we asked the residing clinical psychologist Jennifer Gerdts and genetic counselor to help us help our son. We asked them about the most effective way to bring change to the current state of awareness and understanding for my son’s condition. Their response was to form a non-profit foundation dedicated to the rare disease. They had seen this approach help several of the other rare monogenetic conditions studied by the Simons Foundation. A couple of weeks later, the decision was made to form SETBP1 Society.

Previous career: Prior to having kids, I worked in the networking software industry where I had the chance to expand my skill set as a product and project manager. I also dabbled in web development. Those skills easily transfer to the work I do for SETBP1 Society. 

Education: Bachelor’s degree in mathematics from The University of Texas at Austin and a certification in business administration

The Organization

Organization’s mandate: Our mandate is to find a treatment to improve the quality of life for all individuals impacted by SETBP1 disorder.

Organization’s strategy: We work to find treatments for our patients through education, awareness, research promotion and collaboration, and a relentless pursuit to learn more about the SETBP1 gene and SETBP1 disorder.

Funding strategy: Our organization has relied on grassroots fundraising from our SETBP1 communities and partnering with other organizations to increase our fundraising capabilities. Last spring, we partnered with Global Genes and Festival of Children Foundation to raise funds through the Carousel of Possible Dreams fundraiser. This spring we are partnering with the University of Pennsylvania Orphan Disease Center to join more than 30 other rare disease organizations in the Million Dollar Bike Ride fundraiser. All funds we raise for Team #SETBP1Strong will go directly to SETBP1 disorder research. The University of Pennsylvania Orphan Disease Center will match dollar for dollar up to $30,000.

What’s changing at your organization in the next year: For the first time, we will see our funds raised by our dedicated and supportive community invested in SETBP1 disorder research. We get to track the progress and see our dollars making an impact. We will have our first in-person SETBP1 community meetup when we are in Philadelphia participating in the Million Dollar Bike Ride. We are collaborating with more researchers than we have in the past. For example, our community is partnering with Angela Morgan from the Murdoch Children’s Research Institute to aid in our SETBP1 speech and language phenotype study.

Management Style: I am still learning. This is on-the-job training. 

Management philosophy: I think collaboration is key to learning and advancing the mission.  The SETBP1 Society board and medical and scientific advisory board form a team of amazing professionals dedicated to advancing our mission. Our medical and scientific advisory board helps guide our research strategy and ensures all our documentation about SETBP1 disorder is consistent and scientifically-based.

Guiding principles for running an effective organization: Collaborate with our team and with other rare disease leaders in the community. Partnering with Global Genes and with organizations like Simons VIP, whose mission is to advance research in the autism and developmental delay field, helps advance our mission quicker. We continue to reach out to organizations like the FRAXA Foundation, Rhett Syndrome Research Trust, the LouLou Foundation, and other notable rare disease community foundations to learn from them about what has worked and not worked, which has helped us avoid some pitfalls. We also reach out to other rare disease organization leaders who are at a similar stage as we are to share best practices and non-profit resources so we are not re-inventing the wheel and can spend more time focusing on our mission rather than the logistics of running the organization.   

Best way to keep your organization relevant: No other organizations are focused on raising awareness for SETBP1 disorder. We collaborate when we can as we are a small, volunteer-based organization helping a very small community. We hope to have competition and more collaboration in the future.

Why people like working with you: I’m hopeful and positive. They know they can depend on me when I say I am going to do something. I do everything in my power to uphold my word. I am passionate about our cause and advancing research.

Mentor: I have several. My mentor in life and with parenting a special needs child is my good friend Stephanie LeCompte. Alice McConnell, one of my board members, has been a big advocate for me along this new rare disease journey. Families SCN2A Foundation President Leah Schust and Carla Forbes provided invaluable advice when I was setting up SETBP1 Society. 

On the Job

What inspires you: My son with SETBP1 disorder with his energy and struggles, my entire family, and other rare leaders who have walked down the road before me and have paved the way all inspire me. 

What makes you hopeful: The landscape is changing for the rare disease community. There are treatments like gene therapy that are now approved for specific retinal eye diseases, as well as specific skin, blood, and prostate cancers. There are clinical trials for various forms of muscular dystrophy and clinical trials about to launch for neurodevelopmental disorders including Rhett Syndrome. There are many more pharmaceutical companies motivated to develop or repurpose drugs for the rare disease community and researchers are more open to collaboration than in the past. I think more and more researchers are seeing rare disease organizations as potential partners to help advance their research. One example is by helping to connect them with patients for research studies or connecting researchers with registry or patient data. There are also other exciting new treatment advancements underway. 

Best organization decision: Attending the RARE Patient Advocacy Summit in the fall of 2017 was a game changer for our organization and helped take our newly formed non-profit to the next level through guidance, partnerships, and networking. We formed our medical and scientific advisory board, connected with Siddharth Srivastava, the pediatric neurologist for our community at Boston Children’s, and received input for developing our organization documents, such as our conflict of interest policy.

Hardest lesson learned: With our organization being so new and our continual efforts to reach out to other larger, more established rare disease organizations to learn from them, we have learned along the way certain steps not to take. We have had many candid conversations about what not to do. There are many strong, powerful leaders in the rare disease community who are willing to take their time to share their experiences, their goals, and their struggles with newly formed rare disease nonprofit founders or leaders. We have a lot to learn and I am certain we will stumble at times but so far, we have not had any major setbacks or detours that have mischanneled our limited resources or have veered us off-course from our original mission. 

Toughest organization decision: Where to invest our SETBP1 Society funds. In 2018, we launched our first grant application process and received numerous promising research grant proposals. It was difficult to determine where to direct our limited funds.

Biggest missed opportunity: We just formed a year-and-a-half ago, so we have not had the chance to have missed opportunities.

Like best about the job: I get to do something every day that I am passionate about. I get to feel like I am making a difference to change the landscape for the SETBP1 community. I talk with amazing people who are creating change in the world every day.

Like least about the job: Since I spend a lot of my time helping and leading SETBP1 Society, I worry that I do not spend enough time seeing and enjoying my son with SETBP1 disorder exactly for who he is.

Pet peeve: Unreliability—I don’t like when people fail to follow through with commitments.

First choice for a new career: I’d want to make an impact in another non-profit space. Global Gene’s mission to connect, empower, and inspire the rare disease community is a mission I believe in whole-heartedly and making a difference from a larger lens in the rare disease space is another career I could see myself in.

Personal Taste

Most influential book: I have always enjoyed reading modern classic books like Jack Kerouac’s On the Road, Sylvia Plath’s The Bell Jar, and Khaled Hosseini’s The Kite Runner. 

Favorite movie: Lord of the Rings trilogy

Favorite music: electronic music and alternative rock

Favorite food: Sushi and Thai

Guilty pleasure: Chocolate yogurt, a glass of wine to wind down at the end of the week, and Netflix shows

Favorite way to spend free time: I like traveling with family and visiting new places, hiking, reading, and getting out with my friends.