🙌 High Five from TESS!

E-Newsletter

June 2024

Hello TESS Supporters 👋

Welcome to the June edition of our high-five newsletter and HAPPY SUMMER! ☀️

Busy with summer plans? Here is the tl;dr version of what TESS has been up to! You can scroll down to get the finer details when you have a second.

More than $215,000 was raised at our third annual Derby Day Fundraiser! A huge thank you to our supporters!
Registrations are still live for our SLC13A5 Research Conference & TESS Family day, August 2-3 in Providence, Rhode Island. Register NOW!
Awareness Day was on May 13th and we loved seeing all the love and support for our TESS Superheroes! Thanks to everyone for their posts and shares.
Dive into our latest Science Simplified article and learn about CRISPR, a gene editing tool.
Read all about Colton, our TESS Superhero of the month!

We couldn't do all this amazing work without our incredible TESS community! We are endlessly grateful for all of you.

Warmly,

Team TESS

TESS Research Foundation

Over $215,000 Raised at Derby Day

We wanted to take a moment to update everyone on the total amount raised at our third annual Derby Day Fundraiser, held on May 4th. Our incredible community donated more than $215,000 and we are so grateful for this love and support! Because of you, SLC13A5 research is progressing and we are getting closer and closer to finding better treatments for SLC13A5 Epilepsy! Thank you from everyone on Team TESS!

Read our blog post and watch our video that captured the spirit of the day!

Registrations are STILL OPEN for our 2024 SLC13A5 Research Conference & TESS Family Day to be held August 2-3, 2024 in Providence, Rhode Island. This conference includes science and family tracks and is a time for us to come together to develop an updated patient-centered research agenda.

This conference is funded in part by PCORI and the Doyle Foundation.

Thanks for Your Support on Awareness Day

BIG thanks to everyone who participated in SLC13A5 International Awareness Day on May 13th! We are so grateful to our community for sharing their love for our TESS Superheroes!

Awareness is a crucial part to paving a pathway for effective treatments and your support does not go unnoticed.

Science Simplified

Our latest Science Simplified explores CRISPR, a gene editing tool that interacts with and makes changes to DNA code. What is CRISPR? How does it work? What is it used for?

Read the latest article authored by Joel Bohning, a research associate at Duke University to find out more.

TESS Superhero Check In: Colton

We thought it would be fun to check in with our Superheroes to see what they've been up to. Colton is our TESS Superhero of the month! Colton is 10 and lives in California.

Learn more about Colton on his permanent Superhero page.

In case you missed it!

Saturday Story:

Celeste, Tessa, and Colton

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 featured Celeste's, TESS Superheroes Tessa and Colton's Noni, journey in our Saturday Story and are excited to share her story with you all.

Read the full story now.

Team TESS Tuesday:

Dawn Blessing

We recently featured Dawn Blessing, MBA, a TESS Scientific Advisory Board Member for our Team TESS Tuesday post!

Dawn is the Chief Business Officer at Neucore Bio and she has 30 years of experience in biotechnology finance, business development, and alliance management.

Read the full interview here.

May TESS Superhero Check In:

Brady!

Brady is now 17 and lives in Florida. Here are some fun facts about Brady:

Brady has a trach now and can finally breathe!
He is VERY happy now!
Brady still loves to watch SpongeBob SquarePants every day.
He loves hanging out with his big brother and nurse!

Read more about Brady here.

RESOLUTE: Resources for Solute Carrier Transporters

RESOLUTE is a consortium with a mission to intensify worldwide research on SLCs and to establish them as a novel class target for medical research.The RESOLUTE consortium has come to a close but they have made a lasting legacy with so many publicly available reagents & tools, dashboards, and datasets available online for the SLC research community - including resources for SLC13A5.

Dive into their resources now.