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One of the biggest questions we have here at TESS is, “how does SLC13A5 Epilepsy lead to seizures and other neurological problems?” One way researchers are currently tackling this question is using a technique called RNA sequencing, or "RNAseq". In this article, we’ll talk all about RNAseq, what it is, how it’s performed, and why it’s relevant to SLC13A5 epilepsy.

Today, we are thrilled to share that CZI has awarded TESS an additional $150,000 and continued engagement with the RAO network (which now includes 50 patient-led organizations in the rare disease space) for another year! We are deeply grateful for CZI’s continuing generosity and unwavering support of TESS Research Foundation.

TESS Research Foundation has partnered with Uplifting Athletes, a nonprofit organization dedicated to serving the Rare Disease Community, to support young research investigators focused on rare genetic and rare muscular and neurological disorders. As part of this collaboration, Naomi Dirckx, PhD, from Johns Hopkins was recently selected by Uplifting Athletes as a member of its 2022 Young Investigator Draft Class and awarded a $20,000 unrestricted rare disease research grant.

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Halldóra María is a SLC13A5 Superhero. Here are a few fun facts Halldóra María’s parents shared with us! Name: Halldóra María, Age: 8, Homecountry: Iceland, Halldóra loves toasted bread with butter and cheese. Sometimes she only wants small bites, other times only the whole slice and we never know which one it will be!

Q: How does the work you are doing have the potential to help those with SLC13A5 Epilepsy? A: My role is to help ensure the sustainability of TESS Research Foundation by developing, executing, and supporting our fundraising and stewardship initiatives. I work to spread awareness of SLC13A5 Epilepsy and the Foundation’s aims and help raise the funds necessary for our work to continue. Every gift and dollar raised goes toward research for treatments, care, and ultimately, a cure for SLC13A5 Epilepsy...

Reading a scientific research article can be really daunting. Scientists who have studied a specific topic for many years are more likely to use “jargon” or very specific and complex terms that even scientists in other fields may not understand, let alone someone without a science background. So how do you begin approaching a research article you are interested in? Last month, we wrote a blog post about the anatomy of a research article, which is a great place to start—making sure you are familiar with all the parts and sections of the paper. Now, in this month’s blog, we will talk about how to approach reading and understanding those sections.