The Voices of MED13L

Episode 1: Welcome & Where We’re Headed

Hosted by Vanessa Dias & Katie Boychuck

In this trailer episode, we introduce the hosts and The MED13L Foundation—how it started, what drives us, and why this podcast exists.
Whether you're navigating a new diagnosis, supporting a loved one, or working in research or medicine, this episode offers a personal and accessible introduction to MED13L Syndrome and the global community coming together around it.

We share the story of how the Foundation began, our mission and values, and what success looks like as we push toward earlier diagnoses, stronger family support, and meaningful progress in research.

What you’ll hear in this episode:

– Meet your hosts
– How the MED13L Foundation came to be
– Our mission, values, and goals
– How we’re building connection, support, and hope
– What to expect from future episodes

Resources

Register with the Foundation’s Census: HERE
Access the Community Checklist: HERE
Citizen Health: https://www.citizen.health/partners/med13l-foundation
Rare-X: https://rare-x.org/med13l/
Website: www.med13l.org
Facebook:  https://www.facebook.com/med13lfoundation/
Instagram:  https://www.instagram.com/med13lfoundation/#

Next up:

Updates and the Foundation’s most pressing needs.

Submit topics you'd like to hear covered HERE

Music Credit:
Intro and outro music for the Voices of MED13L Foundation podcast was composed and performed by Sophie Seaver, sibling of an individual with MED13L syndrome. We thank Sophie for sharing her talent with our community.

Transcript

Voices of MED13L Foundation Podcast – Trailer Episode

“Welcome & Where We’re Headed”

Transcript

Vanessa:

Hi everyone — and welcome to The MED13L Foundation’s new podcast, The Voices of MED13L.
 My name is Vanessa Dias. I’m the Vice Chair of The MED13L Foundation and a parent of a child with MED13L Syndrome. I’m here with my co-host, fellow MED13L parent and Chair of the Foundation, Katie Boychuck.
 
 Like many of you, we didn’t know what MED13L Syndrome was until it turned our world upside down.
 
 We know how hard it can be to even find the time to press play on something like this — because when you’re navigating life with a rare diagnosis, there’s barely a minute to breathe, let alone listen. But we want to start by saying this: you’re not alone.

Part 1 – The Story Behind the Foundation

Vanessa:

I’d like to welcome you to the podcast with a little background on the Foundation, and then Katie will share where we’re headed.
 
 In 2017, The MED13L Foundation was founded by the Sexton family, whose two children were diagnosed with MED13L syndrome. Driven by love and resilience, they mobilized their community in Barrington, New Jersey to raise awareness and bring attention to this rare condition.
 
 From the very beginning, the Sextons set out to build more than just a foundation — they built a sense of belonging. Their mission focused on forging connections across states, countries, and time zones to ensure that no family facing MED13L syndrome would ever feel alone.

Katie:

Today, that mission has grown into a global nonprofit. We unite families, researchers, clinicians, and supporters to push for answers, connection, and eventually, treatments.
 
 We fund research.
 We support families.
 We educate doctors.
 We fight for visibility.
 
 But we also do something less measurable — and just as important: we create hope. It’s a hope tempered with reality, fueled by love, and grounded in purpose.
 
 Because here’s the truth: time is our greatest enemy. But so are missed opportunities to learn from each other. That’s why we lean into connection — into sharing our stories.
 
 We may go about things differently, but we are all aligned in our ultimate goal: giving the person we love with MED13L the best life possible.

Part 2 – The Why Behind This Podcast

Vanessa:

Currently, the Foundation pushes out newsletters packed with information and has a robust online social community. So, why a podcast?

Katie:

Because we know how powerful it is to hear a voice. Not just read an article or scroll a post, but to really hear someone guiding you — reminding you that even though this is hard, your hard looks a little like my hard.
 
 This podcast is for the newly diagnosed parent Googling at midnight.
 For the sibling who wants to understand their brother or sister.
 For the grandparent who doesn’t quite know how to help.
 And yes — for the clinician, the researcher, the therapist, and the educator who want to know more than just the science.
 
 I believe in the power of “yet.”
 My Collin can’t talk — yet.
 He doesn’t run or jump — yet.
 We don’t have a cure — yet.
 
 I know you want to know: what are we doing to get there?
 
 Each month, I’ll kick things off with a Foundation Update — covering the latest news, research milestones, upcoming events, and most importantly, the call to action for our community. Be sure to check the show notes for a few key “must-dos” linked for you today.
 
 So if anything in this episode is confusing, if you just want to know why, or if you simply want to talk to someone who understands — reach out. Drop your question in the comments, or email us at info@med13l.org. We’re here.

Vanessa:

And periodically, I — along with guest hosts — will dive into deeper topics that are important to understanding your child’s diagnosis, what the latest research means, and how to support your child’s development.

Part 3 – What’s Next

Katie:

In our first episode, I’ll cover the Foundation’s greatest current needs — and why your support matters more than ever.
 
 Be sure to subscribe to our channel wherever you listen to your favorite podcasts, as well as our YouTube channel. And visit our website at med13l.org to sign up for our newsletters.

Closing

Vanessa:

Until next time — take care.