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Jan. 17, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation

Posted by Valaree DonFrancesco

At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation 

Leah advocates for those living with… SCN2A Disorders 

Leah is located in… Gettysburg, PA 

How Leah got here… 

My son had his first seizure a few days after his first birthday. Our world was forever changed that day. It took another two years and a lot of advocating to get a diagnosis and when we finally did, SCN2A Disorder, there was nothing to learn from, no one to turn to; we were completely alone.  It was then that I started an online support group in the hope of finding others. The group grew quickly and we joined forces with other parents of children with SCN2A disorders to found the FamilieSCN2A Foundation.

What’s working now… 

Our online support group has grown to 700 families from around the world, all fighting the same battle. By having parents at the wheel, we remain patient focused, and this is critical to staying on track with our mission. We have advocated to get SCN2A on the map by representing at all of the major epilepsy and autism conferences, through social media outlets and our website. The Foundation has supported young investigators starting their careers and contributed to much bigger projects leading to therapeutic development. What started as grassroots fundraising, through car shows, cornhole tournaments and 5k races, has turned into something so much bigger than we could have imagined. This year our virtual 2k run included participants from all over the world. Most recently, we held our first gala, which raised over $450,000.

What’s happening in 2020… 

In 2020, we will continue the many amazing family programs we have started over the last 4 years, but we will be adding new ones too! We will be starting a Patient Assistance Grant program to help struggling families. Since we are increasing our efforts to help families, we also plan to increase our support for researchers through our Action Potential Grant program and Young Investigator Grant through AES. We plan to start our first clinical trials for new treatments in 2020 and 2021, so this will lead to a need for increased fundraising. This will be a record-setting year for sure!

The next five years… 

We hope to transition into clinical trials and develop several effective treatments and cures for children. I also see a shift towards focusing on access. The needs of our community will always exist. I see our organization growing bigger. 

Tips for running your organization… 

Focus on building relationships with families. Community is key. It is important to focus on the greater good and not just your own personal needs for your loved one. I would also say that it is crucial to facilitate collaboration in the research community. Everyone is doing great work, but in silos. If researchers collaborate they will avoid duplicating research and can advance. We are all on the same team here. Of course there is some competition, but as children are suffering and dying, there has to come a time when this matters more.

Leah’s lessons for other leaders… 

Do not even attempt to go it alone. It takes a village and a lot of people working together. Don’t try to change the world, focus on one small part. Be strategic. You can’t do everything. If you try to, you end up not doing any piece of it fully. 

Leah’s outlook… 

I remain hopeful by reminding myself what an honor and privilege my role is. It is all about perspective. The community is full of such a vast spectrum of abilities and disabilities. I know families who have lost their kids, but still consider themselves lucky. I know parents whose children have lost the ability to eat and need a feeding tube, but they consider themselves lucky because, compared to others, their child is okay. Perspective is an amazing thing. I am hopeful because I talk to researchers and hear about their progress. There is no other option but to find a cure. So it has to be. I believe. 

Leah’s most recently used NORD service… 

I just used BoardSource for revamping our board. It was so helpful for guiding the transition from moving the role of President to an Executive Director position. 

If Leah found a cure and had to find another job, she would… I’d continue to support patients and their families. 

Leah wants you to read… From Emotions to Advocacy by Pam Wright and Pete Wright 

Leah would rather be… Swimming and therapeutic horseback riding with my son