🙌 High Five from TESS!

E-Newsletter

October 2024

Hello TESS Supporters 👋

Welcome to the October edition of our high-five newsletter!

As the season changes and fall settles in, we are excited to share our latest updates, milestones, and stories from the TESS community. This month, we are getting ready for National Epilepsy Awareness Month in November, preparing new fundraising opportunities, and celebrating the incredible work and achievements of our TESS community. Grab a cozy drink and dive in!

Here are October's highlights, scroll down for all the details:

November is National Epilepsy Awareness Month. Keep an eye on our social media pages to stay informed!
Read our latest SLC13A5 paper: The growing research toolbox for SLC13A5 citrate transporter disorder: a rare disease with animal models, cell lines, an ongoing Natural History Study and an engaged patient advocacy organization
We are looking for volunteers to join our team! We have a variety of remote volunteer opportunities available. Fill out our volunteer form today!
There are countless ways to help raise awareness and financial support for TESS! Email lindsay@tessfoundation.org to get started.
Jaylon is the October Superhero of the Month! Find out what he's been up to since we last checked in with him.

Warmly,

Team TESS

TESS Research Foundation

Epilepsy Awareness Month is Next Month

November is National Epilepsy Awareness Month! Did you know that 1 in 26 people have epilepsy? That's 3.4 million people in the United States (470,000 being children) alone. There are many causes of epilepsy: genetics, autoimmune disorders, brain trauma, metabolic issues, or infectious disease. SLC13A5 Epilepsy is a genetic epilepsy.

Keep an eye on our social media during the month of November to learn more about SLC13A5 Epilepsy, TESS Research Foundation, and our TESS Superheroes.

Looking for other ways to get involved? We got you -- head to our website to donate, get connected, raise awareness, or share your skills.

New SLC13A5 Epilepsy Publication

Together with our science community, Team TESS has published a new paper on SLC13A5 Epilepsy!

In this publication, Tanya Brown, PhD, Matthew Bainbridge, PhD, Grit Zahn, PhD, Kim Nye, and Brenda Porter, MD, PhD, describe the SLC13A5 resources available from the TESS community of experts, including foundational and in vivo and in vitro tools. They also discuss unanswered research questions that will hopefully bring us closer to effective treatments.

Read the paper now.

Volunteer with TESS

Calling all volunteers! Interested in getting more involved with TESS Research Foundation? Whether you have skills in marketing, design, grant writing, event planning, fundraising, accounting, drug development, legal experience, or something else —we want to hear from you! We are always looking for passionate and committed people to join Team TESS and help further our mission.

Fill out our volunteer form now.

Fundraise for TESS

Looking for a new way to support TESS Research Foundation? Launch a fundraiser to help raise awareness and financial support! Whether it's hosting a dine-out at your favorite restaurant, a paint-night with friends, a fun run, or a bake sale in your community—no idea is too big or small!

Connect with Lindsay to brainstorm how you can host a fundraising event.

TESS Superhero Check In: Jaylon

Jaylon is our TESS Superhero of the month! Jaylon is 19 and lives in Texas. We thought it would be fun to check in with him to see what he's been up to since he was first featured in March 2021.

Learn about Jaylon here.

In case you missed it!

Saturday Story:

Naillaret and Yavi

Stories from members of the TESS community aim to give our followers a glimpse of what it might be like to love and care for someone with SLC13A5 Epilepsy.

We recently reshared an interview between TESS Reporter Maggie and TESS Superhero Yavi's sister, Naillaret. We hope you enjoy hearing Naillaret share her sibling perspective.

Watch the interview now.

Team TESS Tuesday:

Bob Wassman

Don't miss reading our Team TESS Tuesday interview with Bob Wassman, MD, a member of TESS' Board of Directors and Liaison to the TESS Scientific Advisory Board!

Dr. Wassman pioneered the introduction of genetic testing and personalized medicine and has worked in the field for 30+ years. He is currently the Chief Medical Officer at TREND Community.

Read the full interview here.

Mom Mondays: TESS Superhero Meredith's School Experience

For this month's Mom Mondays, Amber sat down with our US Family Outreach Coordinator and TESS Superhero Meredith's mom, Nicole, to talk about what the school experience has been like for Meredith.

Watch the episode now.

Dr. Porter Receives TESS Superhero Award

We are thrilled that Dr. Brenda Porter is our latest TESS Research Foundation Superhero Awardee! She received her award in August at our 2024 SLC13A5 Research Conference & TESS Family Day in Providence, Rhode Island.