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A Monthly E-Newsletter 
 January 2021
Happy New Year to our TESS Research community of caregivers, clinicians, researchers and donors.  We are grateful for your support.

Read on for 5 ways to stay engaged, informed and inspired about SLC13A5 Epilepsy as we kick off the new year.  New therapies are progressing; we are invited to speak at national epilepsy conferences; our families share their journeys; we are hiring, and we are part of the conversation around participating in clinical trials. 

Mark your calendars now for TESS Research Family Virtual Happy Hours the 3rd Wednesday of the month and our Sibling Support groups the last Saturday of the month.  Stay tuned next month for more information about our Natural History Study! 
1
Good news for a gene therapy for SLC13A5
Big News! Taysha Gene Therapies receives rare pediatric and orphan drug designations for TSHA-105 for the treatment of epilepsy caused by SLC13A5 Deficiency.  Although the therapy is not yet ready for clinical trials, this is an important step because both designations may lead to a faster and more efficient development path for TSHA-105.  Read more here
2
TESS President speaks at national epilepsy conference
 
Got 5 minutes?  Watch Kim Nye present at Curing the Epilepsies 2021.  This meeting, hosted by National Institutes of Health NINDS, is held every 7 years to establish the priorities in epilepsy research and includes the top thought leaders in epilepsy.  
3
Meet Ellie and her family
"I reached out to TESS shortly after Ellie's diagnosis.  They provided access to critical information about symptoms and treatments and connected us with other affected families, lessening the grief and isolation of navigating a medically complex disorder.  We are grateful to the clinicians and researchers working tirelessly to find a cure.  We are deeply appreciative of TESS's efforts to help Ellie live an everyday life.  It is our hope that one day, we may hear our little girl say 'Mommy' or 'Daddy'."   --Erika, Ellie's Mom
4
Join Team TESS
We are looking for a Research Program Manager.  Read the full job description here and help us spread the word to qualified candidates.
5
Participating in clinical trials is critical toward curing SLC13A5 and other epilepsies
Watch CURE Epilepsy's Seizing Life Episode 57 where we speak with Kim Nye about her experiences enrolling her children in epilepsy clinical trials.  Hear insights and advice from someone who’s been through multiple trials and continues to participate in order to push epilepsy research forward.
Donate
Help support TESS research, outreach and community.  Make a donation today.

OUR MISSION:

Improving the lives of those impacted by SLC13A5 Epilepsy (a Citrate Transporter Disorder) through research and community.
 


TESS Research Foundation is proud to be a GuideStar Platinum Nonprofit Profile participant.

TESS Research Foundation is a 501(c)(3) tax-exempt public charity.
Tax ID Number 47-3108868

Our mailing address is:
PO Box 53
655 Oak Grove Ave
Menlo Park, CA 94026

Copyright © 2020 TESS Research Foundation, All rights reserved.
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TESS Research Foundation · 655 Oak Grove Ave #53 · Menlo Park, CA 94026 · USA

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