RARE Daily

Rare Leader, Leah Schust Myers, Executive Director, FamilieSCN2A Foundation

July 23, 2020

The Basics
Name: Leah Schust Myers

Title: Founder and executive director

Organization: FamilieSCN2A Foundation

Social Media Links:

Disease focus: Epilepsy and Autism associated with a change in the SCN2A gene

Headquarters: East Longmeadow, Massachusetts

How did you become involved in rare disease: My little boy was having developmental delays and during his first year, I knew something was terribly wrong. However, I couldn’t convince anybody else. Everyone kept telling me that I was a little bit paranoid, or an overconcerned first-time mom. But when he started having seizures at age 1, right after his first birthday, is when everyone started to see what I saw and take it very seriously. He didn’t get the diagnosis of SCN2A until 2013 at age 3.

Previous career: Project manager in healthcare

Education: Licensed practical nurse, Radford University Virginia

The Organization
Organization’s mandate: We’re an organization created by parents of children diagnosed with rare forms of epilepsy and autism as a result of a change in the SCN2A gene. Our vision is to find effective treatments and a cure for SCN related disorders. Our mission is to improve the lives of those affected by SCN2A related disorders, through research, public awareness, family support, and patient advocacy.

Organization’s strategy: To accomplish our vision and mission, we coordinate and collaborate with the global scientific community to understand the function of the SCN2A gene to develop effective treatments and a cure for SCN2A disorders. We increase medical community and public awareness of the complexity and potential severity of SCN2A disorders. We provide educational and emotional support for those affected by SCN2A disorders. And we raise money to fund our goals.

Funding strategy: It is all grassroots fundraising at this point. We do not have any industry support at this time. We’re starting to get into that now, but it’s all grassroots fundraising.

What’s changing at your organization in the next year: Clinical trials are beginning in the next year two years. We’re ramping up research funding. We’ll be funding more this year than we have in all other years combined. Also, our board of directors is transitioning to a more professional board and away from a working board.

Management Style I delegate. I can’t do it alone. If I did, we would fail. I motivate and pull each team member in to maximize production and participation and so they feel ownership. I work to create emotional bonds and harmony, and work to heal rifts in teams or motivate people in stressful times. I am laser focused on endpoints and keeping the team accountable.

Management philosophy: I thrive on my board and community’s feedback and focus on strategy implementation. The relationship between me and the board is built on trust and earned respect. I lead by example, as I am the first to volunteer to get my hands dirty and do the grunt work. I believe that each of the board members serves a huge role and strengthening them will strengthen the foundation.

Guiding principles for running an effective organization: First and foremost, I believe myself to be a steward serving the community. I don’t go it alone. I build a team from the beginning who have shared values and ethics. Each member of the team will bring their unique perspective and expertise to the table. This type of setup ensures that you can serve a broad group of people. I believe in learning how to build the plane while you are flying it. Adaptability is what is needed to survive in the ever-changing environment, as we’ve learned from COVID-19 and fundraising.

Best way to keep your organization relevant: Regular evaluation of the community’s needs to ensure you are meeting them and making the improvements necessary. Also, staying true to the mission statement at all times.

Why people like working with you: I get along with everyone. I listen and am considerate of other opinions and views.  My board has said they appreciate my ability to read the room and understand how to engage effectively given the audience.  This is critical: to be able to talk science to researchers, medical terminology to clinicians, business to industry, and compassion to patients and families.

Mentor: My mother is a survivor of many things. She is the smartest person I know and has taught me the most important lesson in life: You can’t always control the hand you’re dealt, but whatever you do, don’t do nothing. Also, my sister has been a constant coach in all things business, relationships, and courage.  She has helped me to recognize that I am a leader and to hone those skills.  Most importantly she has taught me to believe in myself and put forth good energy into everything I do.  And Mary Anne Meskis from Dravet Syndrome Foundation and Christina Saninocencio from LGS Foundation have taught me everything I know about best practices in the non-profit rare disease world.  These women and the teams they lead have played an essential role in our success. I will forever be grateful to them for their support.

On the Job
What inspires you: Seeing hope in the hearts of the families

What makes you hopeful: Listening to the researchers discuss their latest discoveries and seeing other rare disease groups have treatments approved

Best organization decision: Setting up the nonprofit status and building a strong structure based on shared values and ethics. Also, holding everyone involved accountable for living up to these standards.

Hardest lesson learned: You can’t do everything, at least not well. It is best to choose a few small goals and stay laser focused on these.

Toughest organization decision: The toughest decision was to step off the board to take on a staff role.

Biggest missed opportunity: We realized very quickly that collecting quality data on SCN2A patients was one of the most critical steps we should take.  At that time, in 2014, we were still learning and didn’t realize the importance to the foundation of the patients owning the data to ensure access to everyone, including industry. We are currently creating a new data collection where the foundation and more importantly, each patient will have ownership.

Like best about the job: The relationships I build with families, board members and researchers.

Like least about the job: I am working for an organization that I created and help people daily. 

Pet peeve: Competition amongst powers in the same space

First choice for a new career: stay at home mom

Personal Taste
Most influential book: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide by Peter W. D. Wright and Pamela Darr Wright

Favorite movie: Dragonfly with Kevin Costner

Favorite music
: Country

Favorite food: Sushi – good sushi – not buffet sushi – gross.

Guilty pleasure: Moscow mules

Favorite way to spend free time: Soaking in the swim spa with my husband and son.

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