E-Newsletter

August 2023

Dear TESS Supporters,

We realize that we have been sharing a lot of tragic news this summer. Our intention is to honor our TESS Superheroes and support their families while recognizing that this is a complex disorder. 

We are deeply saddened to share that another TESS Superhero passed away in July, due to complications from SLC13A5 Epilepsy. Beautiful Hailey was only 13 months old. Our hearts go out to her parents Stéphanie and Christopher, and we stand with them in their grief.

You can view Hailey’s obituary here and her Superhero page here.

We remain committed to driving research and developing better treatments for SLC13A5 Epilepsy and are grateful to the TESS community for being with us through the highs and lows.

Read on to meet our newest team members, read our latest blog posts, and learn about our TESS Superheroes.



With love and support,

Team TESS

Our Board of Directors plays a pivotal role in guiding TESS Research Foundation's mission, and we cannot express enough gratitude for their unwavering commitment and passion.

Today, we are delighted to announce that Michael Black has joined our Board of Directors as Vice Chair. As the father of TESS Superhero Rowan, Michael brings a deep understanding of the challenges our families face, and he has been a passionate advocate for the work of our foundation since his son's SLC13A5 Epilepsy diagnosis. Michael brings a wealth of knowledge in non-profit organization governance and leadership. Together with the continued support of our dedicated Board, we aim to make a lasting impact in the lives of those battling SLC13A5 Epilepsy.

Read our Team TESS interview with Michael here.

TESS is happy to introduce our extraordinary summer interns, Kaitlyn O'Connor and Annabeth Loftman!

Kaitlyn is a rising junior at Pitzer College and brings a unique perspective to Team TESS having her own experience with drug-resistant seizures. Read more about Kaitlyn here.

Annabeth is a rising junior at Mount Holyoke College and brings what she is learning about neuroscience to Team TESS. Read more about Annabeth here.

Both interns bring fresh perspectives to the TESS community and will be writing their own Science Simplified articles. You can read their Science Simplified articles as they are posted here.

We love our recurring monthly donors! With only 5 months left in 2023 (wow time flies!), our goal is to bring on five new monthly donors! We have already welcomed one...will you be next?!

Monthly donors play a key role in our donor community, as they provide consistent and counted-on revenue that enables us to plan for key projects and bring positive change month after month. Make an impact in our SLC13A5 community by becoming a monthly donor today!

We are excited to share our latest Science Simplified article authored by our intern, Kaitlyn O’Connor. This article describes who makes up your epilepsy care team and the specific responsibilities of each member. Kaitlyn has unique insights, having interacted with each of the mentioned care team members during her own medical journey. Read the full article here.

Mariam is our TESS Superhero of the month! Mariam is 33 and lives in Lebanon!

Learn more about Mariam on her permanent Superhero page.

Karim is 12 and lives in Lebanon. Some fun facts about Karim:

1. Karim is fascinated with the mobile phone and what he can do with it (e.g. making calls and sharing videos).
2. Karim likes to watch TikTok videos about dancing, karate, gym exercises, exotic fruits, and more!
3. He takes selfies and videos of himself all the time and edits them to include background music.

Read more about Karim here.

Rachel Bailey, PhD, Featured as ASGCT Volunteer Rockstar

The American Society of Gene + Cell Therapy recently featured Rachel Bailey, PhD, as a Rockstar Volunteer for all her hard work as chair of the Society's Patient Outreach Committee.

Team TESS agrees that Dr. Bailey is a rockstar and appreciates all she and her team at the Bailey Lab do for TESS Research Foundation!

Read ASGCT's praise for Dr. Bailey here.

TESS at NINDS 2023 Nonprofit Forum

TESS Founder and Executive Director, Kim Nye, recently presented at the National Institute of Neurological Disorders and Stroke (NINDS) 2023 Nonprofit Forum. This annual Progress Through Partnership meeting provides an opportunity for non-profit leaders to network with colleagues and to engage in discussions with NINDS staff.

Awareness and partnerships are key to advancing treatments for SLC13A5 Epilepsy!

CURE Epilepsy x TESS Research Foundation

TESS and CURE Epilepsy are partnering on a new grant: the Rare Epilepsy Partnership Award. This $100K grant will enable the development of research tools, techniques, models systems, and data collection platforms. We are excited to see who receives funding for SLC13A5 Epilepsy research later this year and are seeking donors to help fund our portion of the grant!  

Neurolentech x TESS Research Foundation

Our friends at Neurolentech recently interviewed TESS Executive Director and Founder, Kim Nye!

Read all about TESS Research Foundation's collaboration with Neurolentech here.

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