Oh hi, new followers! ?? We are thrilled to have you as part of #TeamTESS! We wanted to re-introduce ourselves and share our origin story with you all. Watch this video to learn all about the Nye family's journey which led to the creation of TESS Research Foundation. ?????? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness
TESS Research Foundation
学术研究
Menlo Park，California 484 位关注者
Our mission is to help families affected by SLC13A5 Epilepsy
关于我们
TESS Research Foundation is a 501(c)(3) tax exempt public charity established to fund cutting-edge research to diagnose, treat, and ultimately cure SLC13A5 Epilepsy, and provides support for affected children and their families.
- 网站
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https://tessresearch.org/
TESS Research Foundation的外部链接
- 所属行业
- 学术研究
- 规模
- 2-10 人
- 总部
- Menlo Park，California
- 类型
- 非营利机构
- 创立
- 2015
地点
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主要
获取路线
655 Oak Grove Ave
#53
US，California，Menlo Park，94026
TESS Research Foundation员工
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Bob Wassman
Senior Executive & Board Member focused in Genetics, Rare Diseases, Molecular Diagnostics, Laboratory Medicine
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Grit Zahn
Senior Director, Drug Discovery, Pharvaris
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Catherine McDonnell, MA
Director of Communications, TESS Research
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Lindsay Okamoto
Development professional raising awareness and resources for research targeting SLC13A5 Epilepsy
动态
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#TeamTESS has already been so busy in 2025! ?? Here’s a glimpse into what we’ve been up to: ?? January: Amber Black, Director of Operations, attended the Rare Advocate Development Workshop, hosted by Rare Epilepsy Network (REN), Mahzi Therapeutics, and Global Genes, to learn more about drug development. ?? February: Tanya L Brown, PhD, Scientific Director, represented TESS at Pacific Northwest Research Institute's Rare Disease Day Symposium, connecting with researchers, clinicians, and advocates at Seattle Children's Research Institute. ?? March: Kimberly Lodato Nye, Founder & Executive Director, spoke at the Charles River Laboratories 2025 Cell & Gene Therapy Summit, sharing her journey leading TESS and the importance of patient-driven research. We are grateful for these opportunities to learn, connect, and raise awareness for SLC13A5 Epilepsy! #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness
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Research Update! ?? Naomi Dirckx, PhD, recipient of the CURE Epilepsy Rare Epilepsy Partnership Award and the Stevens Family Scholar in SLC13A5 Research, shares an update on her project. ?? Dr. Dirckx is investigating how SLC13A5 mutations affect metabolic processes in the brain. ???? Key findings so far: ? During the first half year of this grant we have focused on the metabolic changes that are happening inside the brains of control and Slc13a5 deficient mice as a model for patients with SLC13A5 epilepsy. ? Data from this experiment showed that crucial neuronal and astrocytic metabolites were significantly altered in the Slc13a5 deficient mouse brains. We even observed a significant decrease in in the ratio of inhibitory over excitatory neurotransmitters, which could contribute to hyperexcitability of neurons, a key characteristic of epileptic activity. ?? Read the full public statement here: https://bit.ly/4hUku9b #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness
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Missed our most recent newsletter? ?? Sign up now to receive information about our latest breakthroughs, upcoming events, and stories about our TESS Superheroes straight to your inbox! ?? https://bit.ly/3ubCbcM #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness
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What do the clinical symptoms of SLC13A5 Epilepsy look like? ?? How do you confirm SLC13A5 Epilepsy with genetic testing? ?? You can find the answer to these questions on our website! ?? Learn more: https://bit.ly/41qwtV7 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness
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Genetic testing can be helpful in determining the care that your child needs. ?? Probably Genetic has a no-cost genetic testing program for individuals experiencing pediatric-onset seizures or developmental delay. ?? Read more and determine eligibility here: https://bit.ly/3XmTXci #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #GeneticTesting #ProbablyGenetic
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We will be attending ASGCT's Empowering Patients 2025 virtual summit! ?? Can't wait to dive into the latest developments in cell and gene therapy from experts and patient advocates. ?? Who else is attending? ?? Register: https://bit.ly/3PP7HZ6 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #ASGCTAdvocacy #ASGCT #TEAMTESS
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We love seeing our Founder & Executive Director, Kimberly Lodato Nye, share her story and the mission of TESS! Patients have always been—and will always be—at the heart of SLC13A5 Epilepsy research! ??
Patient-driven research is not the future—it is happening right now. At today’s Charles River Cell & Gene Therapy Summit, Kimberly Lodato Nye, founder & president of TESS Research Foundation showed how patient advocacy groups are redefining what it means to lead rare disease research and drug development. By building traditional and digital natural history studies, TESS has created a clear, patient-centered view of how #SLC13A5 Epilepsy progresses over time. This real-world data has already contributed to multiple peer-reviewed publications, giving researchers and drug developers a critical baseline to measure whether future treatments actually work. This is patient entrepreneurship in action—families and patient communities moving beyond awareness to actively shaping the science that drives treatments forward. This work is only possible when patient groups, researchers, Citizen Health, and industry leaders like Charles River Laboratories come together to make sure the patient voice is embedded from the very beginning. #CellAndGeneTherapy #AcceleratingCures #PatientDrivenResearch #PatientEntrepreneurs #DigitalNaturalHistory #CandGTherapySummit
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SLC13A5 Epilepsy is also known as SLC13A5 Citrate Transporter Disorder. You might be asking yourself, what is citrate? ?? Citrate is a small molecule that is found in many types of food and throughout a person’s body. It is an important part of how a cell makes energy. The protein that moves citrate from outside a cell into the cell is called a citrate transporter. ?? Keep an eye out on our page for more TESS Terminology! ???? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #TESSTerminology