Access Resources

We have compiled resources about SLC13A5 Epilepsy and related topics so you have information and support at your fingertips. Be sure to check out our blog, our monthly electronic newsletter, and ways to Get Involved. Looking for a fun activity with your family? Check out our Coloring Pages.

Educational Videos, Etc.

TESS offers a variety of educational webinars and videos to help caregivers and families navigate a SLC13A5 Epilepsy diagnosis. Listen at your convenience to practical advice on diagnosis, clinical care, current research, caregiver challenges, and more.

Intro to TESS Research Foundation
Intro to SLC13A5 Epilepsy
FAQs
Life Hacks and Webinars for Families
SLC13A5 Family Stories
Sibling Interviews
Examples of Seizures in SLC13A5 Epilepsy
SLC13A5 Conferences
Family Day Conference
Founder’s Presentations

SLC13A5 Conferences

Research Conferences

2018 Talks

1. Family Thank You’s – SLC13A5 Research Roundtable 2018

2. SLC13A5 Clinical Spectrum with Dr. Brenda Porter – SLC13A5 Research Roundtable 2018

3. Dr. Brenda Porter’s Research Overview – SLC13A5 Research Roundtable 2018

4. Dr. Vadivel Ganapathy’s Research Overview – SLC13A5 Research Roundtable 2018

5. Dr. Anne Murphy’s Research Overview – SLC13A5 Research Roundtable 2018

6. Dr. Toshihiko Ezashi’s Research Overview – SLC13A5 Research Roundtable 2018

7. Dr. Da-Neng Wang’s Research Overview – SLC13A5 Research Roundtable 2018

8. Dr. Sarah Elsea’s Research Overview – SLC13A5 Research Roundtable 2018

9. Dr. Andreas Birkenfeld’s Research Overview – SLC13A5 Research Roundtable 2018

10. Dr. Rachel Bailey’s Research Overview – SLC13A5 Research Roundtable 2018

2020 Talks (Public)

1. Welcome & Introduction to TESS Research Foundation – Kimberly Nye – Research Roundtable 2020

2. SLC13A5 Clinical Overview – Brenda E. Porter – Research Roundtable 2020

3. SLC13A5 as a novel pharmacologic target for metformin and its relevance to the antidiabetic efficacy of the drug – Vadivel Ganapathy – Research Roundtable 2020

4. SLC13A5 Research Overview – Matthew Bainbridge – Research Roundtable 2020

5. Classification of SLC13A5 Deficiency Mutations and Assays for Small Molecule Drug Screen – Da-Neng Wang – Research Roundtable 2020

6. Tools to study SLC13A5 basic science – Grit Zahn – Research Roundtable 2020

7. Patient-derived iPSCs – Adriana Beltran – Research Roundtable 2020

8. Patient-derived iPSCs and NPCs – Toshihiko Ezashi – Research Roundtable 2020

9. Gene Therapy in Clinical Trials – Berge Minassian – Research Roundtable 2020

Family Day Conferences

2020 Talks

1. Raising a Child With SLC13A5 Deficiency (Equipment + Life Hacks + Early Years) – Nicole Windisch – SLC13A5 Deficiency Family Day 2020

2. Living with Seizures – Dr. Brenda Porter, MD, PhD – SLC13A5 Deficiency Family Day 2020

3. What is a Natural History Study? with Dr. Kim Goodspeed, MD – SLC13A5 Deficiency Family Day 2020

Founder’s Presentations

TESS Research Foundation Founder, Kim Nye, is a thought leader in rare gene therapy development. She is frequently invited to give both public and private presentations to the government, nonprofits, and industry on rare disease and epilepsy diagnosis, starting a nonprofit, clinical trial design, and life as a caregiver to two children with disabilities. If you are interested in having Kim speak to your team, you can email her: kim@tessfoundation.org.