TSC Alert

Archive for the ‘News’ Topic

April TSC Preclinical Consortium Meeting

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On April 1 members of the Tuberous Sclerosis Complex (TSC) Preclinical Consortium met in Silver Spring, Maryland to discuss ongoing preclinical projects and set priorities for the rest of the year.

International TAND Research Project Awarded Funding

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Congratulations to Drs. Petrus de Vries (University of Cape Town) and Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) on being awarded funding from the Tuberous Sclerosis Association and the King Baudouin Foundation. Funding for the TANDem Project was awarded at a King Baudouin Foundation awards ceremony on Thursday, April 4, 2019.

Submit Gomez Award Nominations by April 12

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The Tuberous Sclerosis Alliance grants the Manuel R. Gomez Award to individuals who have made a significant impact on our understanding of TSC in research and/or have impacted the delivery of clinical care for individuals with TSC.

Submit Gomez Award Nominations by April 12

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The Tuberous Sclerosis Alliance grants the Manuel R. Gomez Award to individuals who have made a significant impact on our understanding of TSC in research and/or have impacted the delivery of clinical care for individuals with TSC.

In Memoriam: Margaret Susan (Sue) Povey, 1942–2019

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The TS Alliance is deeply saddened by the passing of Sue Povey, whose work contributed to some of the largest discoveries in the genetics of TSC. Our heartfelt condolences go out to Professor Povey’s friends and family.

Welcome to Our New Director of Preclinical Research

Please help us welcome Dean Aguiar, PhD, to the TS Alliance team! Dean is our new Director of Preclinical Research. He will lead the Preclinical Consortium’s future efforts, including the goal to partner with additional companies and academic researchers to help find new ways to treat the multiple, severe and sometimes life-threatening manifestations of TSC. He will also oversee other consortium objectives, including increasing the diversity of models available as well as adding models for TSC-associated neuropsychiatric disorders, an additional epilepsy model and human cell-based models.

Call for Nominations: 2018 Gomez Award

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The Tuberous Sclerosis Alliance grants the Manuel R. Gomez Award to individuals who have made a significant impact on our understanding of TSC in research, and/or have impacted the delivery of clinical care for individuals with TSC.

2017 Year in Review

2017 was a very productive year for advancing the science of tuberous sclerosis complex (TSC)! A very small sampling of our scientific community’s major accomplishments are highlighted below. The TS Alliance thanks all our grantees, collaborators, reviewers, conference attendees, International Scientific Advisory Board members, and Professional Advisory Board members for making these achievements possible.

Voice of the Patient Report

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The TS Alliance has just submitted the Voice of the Patient report to the US Food and Drug Administration (FDA). This report summarizes the Patient-Focused Drug Development (PFDD) meeting that we held on June 21. The PFDD meeting was designed to communicate to FDA the impacts of TSC on individuals’ daily lives, what types of treatment benefits make the most impact on peoples’ lives, and individuals’ and caregivers’ perspectives on how well available therapies are working. The report is now available on our PFDD page.

Updates from NINDS

TS Alliance Chief Scientific Officer Steve Roberds, PhD, serves on the Advisory Council of the National Institute of Neurological Disorders and Stroke. During the open session of the Advisory Council meeting on September 7, 2017, NINDS staff discussed several upcoming funding opportunities: As part of an NIH-wide initiative to enhance diversity in the research workforce, NINDS soon plans to reissue a RFA for NIH Blueprint D-SPAN (F99/K00) award with a due date in December (see the previous RFA for reference). The purpose of the D-SPAN program is to support a defined pathway across career stages for outstanding graduate students who…