TESS Research Foundation

🎉 It’s #TEAMTESSTUESDAY and this month we interviewed Megan Gilbert, MBBS. FRANZCP, a director on the TESS Board & mom to TESS Superhero Scott. 👏 Q: How did you get involved with TESS? A: I am the mother of 28-year-old TESS Superhero Scott, who had a long pathway to the diagnosis of SLC13A5 Epilepsy, having only found out that he had the condition at the age of 26. At this point in our lives, we are very keen to find out as much as we can about the disorder and be as involved as much as possible with the wider community, having spent so much time doing it alone. Q: What inspires you to contribute your time and skills as a director on the TESS board? A: There are so many reasons. First and foremost, there is the drive to find a pathway forward in the management of those who suffer from SLC13A5 Epilepsy—not only in terms of the immediate management of the often refractory epileptic condition but also the long-term goal of gene therapy and cure. Being on the board allows me to be involved directly in this process. Secondly, as a psychiatrist, I am only too aware of the bigger ramifications of this disorder in terms of the impact on families and caregivers, and can lead to issues that may range from adjustment and grief issues to complex PTSD. I am hoping that my involvement on the board can raise awareness of this and hopefully extend support to the wider SLC13A5 Epilepsy community. I also hope that by being in Australia I can extend the TESS community to a much broader, global network. Q: What is the best thing about being part of this community? For me the best thing about this community is the whole sense of community. Having felt isolated from other people and families with this condition, I am personally only too aware of how this has the potential to affect someone negatively. From a psychiatric perspective, three of the most important pillars that support mental health and well-being are being able to commit to something, belonging to something, and being able to act in such a way that benefits others. I can achieve these benefits by being a part of this community, not only as a director on the board, but also as a family member. For this reason, I encourage others to be involved as much as possible. Q: How can others help make a difference for children and families with SLC13A5 Epilepsy? A: Involvement in the TESS community at any level by anybody is beneficial for everybody. This can be done on an individual basis by others providing emotional and, at times, physical support for the superheroes and their families, which eases their load, or can be done on a more communal basis by spreading the word or by financial support. This helps not only those living the experience of SLC13A5 but also benefits the giver as our superheroes have so much that they can teach us about strength, resilience, and unconditional love. Thank you for being part of #TEAMTESS, Megan! 🤩 We're so lucky to have you on our team! 💜

Receiving an SLC13A5 Epilepsy diagnosis for your loved one may bring up a lot of questions for you and your family. What is SLC13A5 Epilepsy? What are the symptoms? Are there any treatments? How is this diagnosed and is it inherited? What's on the horizon for SLC13A5 Epilepsy? And so many more. 💜 Head to our website to find the most up-to-date answers to your questions: https://bit.ly/3AgVDeI Have a question that isn't answered on our website? Email info@tessfoundation.org to connect with a member of #TeamTESS! #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

We're still over the moon about our 2024 SLC13A5 Research Conference & TESS Family Day! 🌟 It was an impressive event with SLC13A5 families, clinicians, researchers, industry members, advocates and more. 👏 Thank you all for making it unforgettable! 💜 Read our conference recap now: https://bit.ly/3XaQiyw #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #ResearchConference ImageThink

Happy Mom Mondays! 💞☕️ 🫶 Today we are resharing a video where Kim and Amber discuss what they wish people knew about kids with SLC13A5 Epilepsy. 💜 Help us spread awareness and share this video! 🙌 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #MomMondays

A week ago the TESS community gathered in Providence, Rhode Island for our 2024 SLC13A5 Research Conference & TESS Family Day! 🎉 💜Connections were made between our family and scientific community, friendships flourished, ideas were shared, and fun was had! 🙌🏻 We hope you enjoy some candid photos that captured the spirit of the conference. 📸🤗 Watch here: https://lnkd.in/emqH_f3b #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

Last month, TESS Development Director, Lindsay, spoke during National Organization for Rare Disorders Individual Giving webinar about her experience implementing an annual fundraising strategy for TESS Research Foundation. 👏💜 Watch now: https://bit.ly/4cew5fv #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #NORD #Fundraising #FundraisingIdeas

The California Institute for Regenerative Medicine (CIRM) is reviewing their funding priorities and our community is committed to advocating for continued funding for rare disease treatments and cures. CIRM is a key funder of this research and without their investments, more than three million Californians (more than 50% being children) could be left without treatments and without hope. 💜 At CIRM's June 27 board meeting, TESS Executive Director and Founder, Kim Nye, shared her personal experiences as a mom to two children with SLC13A5 Epilepsy and expressed the dire need for rare disease funding. 👏 Read Kim's statement now: https://bit.ly/4fsk4WE #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

📢 Hear from TESS families at our 2024 SLC13A5 Research Conference & TESS Family Day for our hybrid meeting on Day 2! 👏 👏 Virtual Registration for Day 2 is still open: https://bit.ly/3S9gJ4J #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #TEAMTESS

It’s #TEAMTESSTUESDAY and this month we interviewed Rich Windisch, JD, a director on the TESS Board & dad to TESS Superhero, Meredith. 💜 Q: How did you get involved with TESS? A: I was introduced to TESS Research Foundation six years ago, shortly after my daughter, Meredith, was diagnosed with SLC13A5 Epilepsy. Since then, I have volunteered to help TESS in any way that I can. Q: What inspires you to contribute your time and skills as a director on TESS’ board? A: My first inspiration is Meredith. She is a determined little girl that gives life her all. She inspires me to push myself as hard as she does. My second inspiration is the TESS community. Since connecting with TESS, I have met many wonderful people, including affected children, their families, and the TESS staff. I am so happy to be in a position where I can help. Q: What is the best thing about being part of this community? A: The best thing about being involved in the TESS community is the love that is shown by all. There are so many individuals that contribute in many different ways. The TESS staff and volunteers devote countless hours towards finding a cure. Families provide one another support and understanding. Countless donors give to help TESS continue to fund necessary research. It really is something very special. Q: How can others help make a difference for children and families with SLC13A5 Epilepsy? A: Spreading awareness. SLC13A5 Epilepsy is extremely rare. The more people that know about the condition, the greater the chance we have of finding a cure. Thank you for being part of #TEAMTESS, Rich! We are so glad to have you on the team! 🙏 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

📣 Uplifting Athletes Young Investigator Draft grants fund collaborative basic bench research in order to positively impact treatments and potential cures for the entire Rare Disease Community. 👏 Apply Now! Applications due Sept 23rd!