TSC Alert

Archive for May, 2022

MILED Trial Currently Enrolling Women with LAM

Please circulate the following to your patients with lymphangioleiomyomatosis (LAM): The MILED Trial is a new research study designed to answer the question of whether we should be starting sirolimus at low doses earlier in the course of disease before symptoms develop and while lung function is still normal. It is led by Dr. McCormack at the University of Cincinnati. The study is being conducted at several LAM Clinics located across the country in Cincinnati, Chicago, Atlanta, Seattle, and New York City. Reimbursement for travel is available for participants to attend study visits.

Research Study on TSC and COVID-19

The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information in their TSC Natural History Database about individuals with TSC who were infected with COVID-19. TSC researchers will use this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and other TSC conditions affect the risk of getting COVID-19 and its severity. If you or your loved one with TSC had COVID-19 confirmed by testing, please consider participating in the TSC Alliance Natural History Database….

Join Our Peer-to-Peer Listserv for Healthcare Professionals

The TSC Alliance invites healthcare professionals affiliated with a TSC Clinic, TSC Center of Excellence, or University Medical Center to subscribe to our private listserv: p2p@lists.tscalliance.org. Its primary purpose is for members to pose TSC-related cases or questions to their peers for feedback. Members may also use the listserv to seek opportunities for collaboration on TSC-related projects. The listserv is monitored to ensure it is being used for appropriate communications.

FY22 TSCRP Funding Opportunities Now Available

The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2022 grant cycle. Three award mechanisms are available this year: Exploration – Hypothesis Development Award (up to $150,000 in direct costs over two years) Idea Development Award (up to $500,000 in direct costs over three years) Clinical Translational Research Award (up to $1,000,000 in direct costs over three years) The deadline to submit a Pre-Application Letter of Intent is June 30, 2021 at 5 pm Eastern. A brief summary of the three award mechanisms and submission requirements can be found here. The TSCRP is part of the…

2022 Fall LAM Foundation Research Funding Cycle Now Open

Scientists who wish to apply for funding from The LAM Foundation must submit a Letter of Intent (LOI) using their online application system at ProposalCENTRAL by June 15. Pilot/Feasibility Award for $50,000 (One Year) Established Investigator Award for $150,000 (Two to Three Years) Francis X. McCormack Career Development Award for $180,000 (Three Years) To learn more about The LAM Foundation research awards and find the instructions on how to navigate our new platform click the button below. LAM GRANT OPPORTUNITIES

Now Accepting Nominations for Preclinical Testing

Nominations accepted until Friday, June 10, 2022  Interested principal investigators (PI) are invited to nominate candidate therapeutics for testing in the TSC Preclinical Consortium’s tumor models. Please complete the short nomination form, available on the TSC Alliance Preclinical Consortium webpage. The form requests no more than two pages of text and/or figures to describe the rationale for the compound and its mechanism of action for TSC. The lead PI must also submit an NIH-style biosketch. Nominations will be accepted until Monday, August 1, 2022.   Companies interested in nominating compounds and retaining confidentiality and ownership of the data should not utilize the nomination…