Rare Leader: Meghan Yarnall, Founder, Show Me Your Genes

The Basics
Name: Meghan Yarnall

Title: Founder

Organization: Show Me Your Genes

Social Media:

Organization’s focus: Our focus is to raise awareness about the importance of genetic testing for kids with autism and developmental disabilities. Through fundraising, we raise money to pay for full exome sequencing when insurance companies will not pay for it. We also offer what we call “empowerment sessions.” This is a one-on-one phone call with a caregiver to build confidence before going into a genetic appointment.

Headquarters: West Chester, Pennsylvania

How did you become involved in rare disease: My daughter was diagnosed with a rare genetic syndrome in 2016. It took us about two and a half years to get the diagnosis. A geneticist up in Boston was finally able to help us get the proper testing. I was so thankful for him and had a little bit of a platform on Facebook and asked him what I could do to help him since he had helped me so much. He said that he has a tough time getting full exome sequencing covered by insurance and was there any way I could help him with that. I thought about it for a while and realized that the autistic community and the global developmental delays community don’t know about genetics. I took his mission and added one more mission on to it and that’s how Show Me Your Genes was created.

Current career: I work full-time as a commercial lender in a bank.

Education: High school diploma

The Organization
Organization’s mandate: Show Me Your Genes is dedicated to raising awareness and funding for genetic testing and research, with a goal to accelerate proper diagnosis and effective life style plans for special needs families. We also try to empower and educate special needs parents before they go to a genetic appointment, so they understand the process and speak their language. A lot of times I’ve been successful at getting insurance companies to cover the cost.

Organization’s strategy: Our strategy has been to reach out via social media to raise awareness about different types of genetic conditions and genetic disorders. We are heavily focused in the autistic community because we know there are now 300 to 400 genes associated with the autism spectrum diagnosis. We are passionate about empowering caregivers to dig deeper to find a proper diagnosis for their dependent. Once a proper diagnosis is found, the dependent will be provided a more accurate path of therapies and treatment and the caregivers will be able to find a community of other people going through the same trials. As a parent who has gone through the process, I know every emotion and need for those events to happen.

Funding strategy: Our goal has always been to organically grow our funding. We’ve done all our fundraising through Facebook. We held one raffle where we were given tickets to Kelly and Ryan Live, which we packaged with a stay in New York City. Our success stories have come not only from the genetic testing but also from our empowerment sessions. Once caregivers are informed of their options and how to properly ask for what they need, the chances that insurance will cover the test is much higher.

What’s changing at your organization in the next year: We are going to start revving up our fundraising goals and we’re going to start advocating more. We’ve joined Twitter recently and gained a lot of attention in a lot of different communities. With the autistic community starting to learn more about genetics we are getting more parents coming to us. What I’ve learned and what’s so empowering for me is that these parents feel they have no voice when they go into a geneticist’s office. They feel they are there just to listen and be told what to do. I teach them what to ask for and what’s going to happen in that appointment, and what their job is as an advocate for their child. We’ve had a lot of success with that.

Management Style
Management philosophy: We are a team. Nobody works alone. We will do whatever it takes in order to get these kids properly diagnosed. Nobody is going to stop me or our team.

Guiding principles for running an effective organization: Listen more, talk less.

Best way to keep your organization relevant: My organization is going to stay relevant because genetics is never going to go away. Once insurance companies establish full exome sequencing test as the only genetic test to use and everyone pays for it including Medicaid and Medicare, we want to start showcasing different genetic disorders, so people are aware of what is out there. If when I was going through this, I had seen Lamb-Shaffer syndrome, I would have known that was my daughter. I want to keep going with this even after insurance companies start paying for this, which I don’t think is going to be anytime soon.

Why people like working with you: I only have a board of directors. I don’t have people who actually work for me. But we all enjoy working together. I have an influential board. I have one of the top neurologists on my board from Kennedy Kroger. I have a social media influencer on my team who helps with marketing and getting the word out. I have a special needs financial advisor on my team, and he works for the person who started special needs financial advising. He is incredibly knowledgeable about the financial struggles special needs families go through. We have encompassed some of that into our repertoire of services and give some free consulting. And we also have someone who is in marketing on our board and she has been amazing with graphics and imaging. She’s been wonderful.

Mentor: My daughter. I’ve never been in the medical field. My daughter doesn’t speak in full sentences, but she has ignited this passion in me, and she has this light that guides me. I don’t know how I know all this stuff, so somebody must have taught me. I believe it is her.

On the Job
What inspires you: What inspires me is when I get to talk to parents and by the end of the conversation they are not crying anymore, and they feel like someone has finally listened to them. Each time I hear that someone is diagnosed properly or that their genetic appointment went really well, it inspires me to no end. It keeps me going.

What makes you hopeful: The hope is that special needs kids are kept in the shadows anymore. It’s still not where it needs to be. They are such special individuals and people are finally learning about that. That gives me hope for the future of humanity.

Best organization decision: Starting it.

Hardest lesson learned: The hardest lesson learned for me is that I can’t fix everything for everybody, even though I want to. I can only give so much of my time because my number one time has to be spent with my family. As much as I want to give myself to others, I keep conversations to 30 minutes and keep that boundary in place.

Toughest organization decision: We haven’t had to decline anybody yet, but I’m assuming if that happens, that will be the toughest.

Biggest missed opportunity: I’ve taken advantage of a lot of different opportunities and spent a lot of time putting our name out there. I don’t think I could do a whole lot more. There are some things I haven’t been able to do yet, but that’s a matter of timing. I’d like to have a special needs fashion show where we highlight the kids’ abilities instead of their disabilities. When they walk down the runway, we’d talk about what they love to do instead of what they are unable to do. We just haven’t come up with the right timing for that. I’m hoping we can do that in the spring.

Like best about the job: I love learning about the different families. I love the fact that I don’t feel as alone as I used to, selfishly, and I know other families don’t as alone once we’ve talked. I love that my heart ache that I went through can turn into something good for someone else. That’s what the world is supposed to be about.

Like least about the job: Fundraising is my least favorite part simply because it is very, very challenging.

Pet peeve: When doctors and specialists are not as passionate and eager to get to the bottom of what they are seeing.

First choice for a new career: I’d love to be a motivational speaker and speak to the special needs community to empower the parents because they deserve to feel empowered.

Personal Taste
Most influential book: Girl, Wash Your Face by Rachel Hollis

Favorite movie: Seven Pounds
Favorite music: Country music and Tim McGraw

Favorite food: Apples and pizza, but not together

Guilty pleasure: Reality TV

Favorite way to spend free time: With my kids. I’m also very into the Peloton bike and Peloton tread.