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Participate in research
The tuberous sclerosis complex (TSC) community is pivotal to advancing research. When you enroll in a clinical trial, share your medical data, donate biosamples or give voice to your lived
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How to participate in behavior and TAND research (2024 webinar)
The TSC Alliance hosted a webinar on May 13, 2024 about two studies on understanding and treating TSC-associated neuropsychiatric disorders (TAND), with a specific focus on behavior problems in children
TSC Research Matters Post
2025 TSC International Research Conference: Forging new discoveries
The 2025 TSC International Research Conference: Engage, Accelerate, Transform was held at the Bethesda North Marriott Hotel & Conference Center in North Bethesda, MD June 26-28, 2025. The conference, hosted
TSC Matters Post
Participate in the Observer Reported Toileting Abilities Survey (ORTAS) Validation Study!
Participate in the Observer Reported Toileting Abilities Survey (ORTAS) Validation Study! Toileting abilities are reported by families to be one of the most important aspects of daily living affected by
FAQ
Keith Hall Research Grant Award
The Keith Hall Research Grant Award was established in memory of Keith Hall, an adult with TSC and a former TSC Alliance board chair and community leader. Keith participated extensively
News Item
0 to 6 months old with TSC needed for research study
Why are we doing this study? Epilepsy is very common in infants diagnosed with tuberous sclerosis complex (TSC) and often very difficult to treat. This study tests if sirolimus, a
Resource
Episode 35: The Past, Present and Future of Autism Research in TSC
In this episode of TSC Now, host Dan Klein recognizes World Autism Month by taking a deep dive on the past, present and future of autism spectrum disorder (ASD) research
TSC Alert
Early Career Researcher Summit
Registration is now open for Reaching the Peak: A Science & Technology Career Summit, Research!America’s summit for early career researchers, on June 30, 2021, 11-6 pm ET.
TSC Matters Post
#March4TSCresearch Update
The annual TSC Alliance March on Capitol Hill to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense’s (DoD) Congressionally Directed Medical
TSC Matters Post
Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research
His research involves analyzing left over fluid and tissue samples from chest and abdominal drains and surgery. After the fluid or tissue is removed and processed by your hospital, he
TSC Matters Post
Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery
We have a brief survey (20 minutes) addressing caregiver satisfaction with epilepsy surgery. You are eligible if you are the caregiver of a child <18 years of age with tuberous
TSC Matters Post
Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research
His research involves analyzing left over fluid and tissue samples from chest and abdominal drains and surgery. After the fluid or tissue is removed and processed by your hospital, he
TSC Matters Post
Tuberous Sclerosis Research Opportunity – Please Help Us Better Understand Factors That Impact the Decision to Undergo Epilepsy Surgery
We have a brief survey (20 minutes) addressing caregiver satisfaction with epilepsy surgery. You are eligible if you are the caregiver of a child <18 years of age with tuberous
TSC Matters Post
Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research
His research involves analyzing left over fluid and tissue samples from chest and abdominal drains and surgery. After the fluid or tissue is removed and processed by your hospital, he
TSC Matters Post
Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research
His research involves analyzing left over fluid and tissue samples from chest and abdominal drains and surgery. After the fluid or tissue is removed and processed by your hospital, he
Story of Hope
Jovee Shae Dreier
TSC was suspected at 23 weeks in utero due to cardiac rhabdomyomas identified during a routine ultrasound. Her diagnosis of TSC2 was confirmed through genetic testing of her cord blood,
News Item
The TSC Alliance announces the retirement of Chief Scientific Officer Steven L. Roberds, PhD.
The TSC Alliance announces the retirement of Chief Scientific Officer Steven L. Roberds, PhD, at the end of December 2026. In preparation for this transition, effective January 1, 2026, Dean
Story of Hope
Allie Legg
Allie was diagnosed with tuberous sclerosis complex (TSC) after she began having seizures at five-weeks-old. Throughout her young life, her seizures were very difficult to control. At the age of four, she underwent
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Reproductive and Perinatal Health Initiative
The Reproductive Health Initiative is vital to this TSC community for many reasons but most especially due to limited data around pregnancy & perinatal healthcare. My belief is the RPH
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Episode 50: What happens when a clinical trial fails?
In the first episode of TSC Now in 2025, host Dan Klein tackles the challenging topic of what happens when a clinical trial fails and how failed clinical trials inform
TSC Matters Post
Join the WINGS Study!
Are you a parent of a child with a genetic syndrome facing challenging behaviors? Participate in the WINGS Study, a research initiative testing two tele-health interventions designed to help parents
Event
Adult Topic Call
Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant
FAQ
Anya’s Accelerator
The goal of Anya’s Accelerator is to catalyze the development of biomarkers to aid clinical care and the development of interventions for autism behaviors and other impactful aspects of TAND.
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Anya’s Accelerator
We are so grateful for the work and progress the TSC Alliance has made over the past 20 years. Anya’s Accelerator will provide an opportunity to advance TAND research and
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2010 TSC Alliance Constituent Survey: Key Findings
The results from the 2010 Constituency Survey will be used to help the TSC Alliance define priorities going forward and guide us as we develop goals and objectives to reach
TSC Matters Post
Steven Sparagana Legacy Fund
Dr. Steven Sparagana’s dedication and pioneering work have been instrumental in advancing tuberous sclerosis complex (TSC) research and improving the lives of countless individuals and families affected by this disease. He
News Item
In Memoriam: Gina Lee, PhD, University of California Irvine
The TSC Alliance and the tuberous sclerosis complex (TSC) community are mourning the recent loss of Gina Lee, PhD, TSC researcher and Assistant Professor at the University of California Irvine
TSC Matters Post
Sleep Study in TSC
Aims of the study The main aim of this study is to document current sleep management strategies employed by families and or paid care staff caring for children or
TSC Matters Post
Ongoing Early Intervention and Autism trials
See below for ongoing trials.
TSC Matters Post
Transition Readiness Survey
Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago would like to invite you to participate in a research study on the readiness to transition
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Five things healthcare providers should know
Are you providing care to a patient with a suspected tuberous sclerosis complex (TSC) diagnosis? Here are five things you need to know: Early diagnosis and management are critical to
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Privacy Policy
Approved by Executive Committee: May 4, 2018 Revisions Approved by Executive Committee: January 30, 2019 Revisions Approved by Executive Committee: May 2, 2025 The TSC Alliance (or “we,” “us,” “our”)
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TSC clinical trials
What is a clinical trial? A clinical trial is a type of research study involving human volunteers. Trials are designed to evaluate the safety and effectiveness of a drug, device
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Honor a loved one
Tributes Tribute gifts can be made in honor or in memory of individuals. It is a wonderful way to send a birthday or anniversary wish, or congratulations for retirement, a
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Organ & Tissue Donation
Biosample Repository and Natural History Database The TSC Natural History Database collects clinical data used to document the impact of TSC on a person’s health, over his or her lifetime.
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Board of Directors
Cathy Evanochko, Chair Cathy Evanochko is one of the founding board members of the organization. In the days prior to the availability of the Internet, an article about Cathy’s family
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Biosample Repository
The Natural History Database and Biosample Repository has been instrumental in advancing my LAM research. The extensive resources within the database have been valuable for my investigations, and the accessibility
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Natural History Database
The Natural History Database is a fantastic resource for research in TSC. It is an incredible resource for those in epidemiology, given its unparalleled size. It is an incredible resource
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Become a member
The TSC Alliance is a membership-based organization, which means members participate in the corporate governance of the organization, which includes electing the Board of Directors. As such, members have a
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Government advocacy
Your voice makes a difference! $121 million appropriated for the TSCRP since 2002 $5.725 million to support clinical care and research at TSC centers in four states 120 volunteer advocates
FAQ
Seizures and TSC: Your data matters!
The TSC Alliance has established a data sharing partnership with Seizure Tracker. Seizure Tracker allows users to log seizure occurrences and other epilepsy care events such as medications, diet, and
FAQ
TSC Natural History Database and Biosample Repository
The TSC Natural History Database collects clinical information from people with TSC and connects to our Biosample Repository. Researchers use this vast collection of data to answer questions and find
FAQ
TSC clinical trials
Choosing to participate in a clinical trial is an important personal decision. It is often helpful to talk to a physician, family members, or friends about deciding to participate in
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Volunteer
Champion our cause: Join the TSC Alliance volunteer movement! The tuberous sclerosis complex (TSC) community is the TSC Alliance’s strongest ally. We rely on our dedicated volunteers to help drive
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Spotlight on TSC Alliance
2024 marks the 50th anniversary of the TSC Alliance®! Throughout the year, we’ll celebrate five decades of progress as well as look forward with much promise for the future. Join
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Lungs
Lung involvement is more common in women with TSC than men. The average age of onset is during the childbearing years, although lung involvement can occasionally occur in teenagers with
Story of Hope
Chloe Carpenter
Chloe was found to have an irregular heartbeat at 12 hours old, with an MRI confirming her TSC diagnosis at 36 hours. She is currently a very happy and engaged
TSC Matters Post
Ongoing Sleep Studies
See below for ongoing trials.
TSC Matters Post
Understanding caregiver experiences of sleep management difficulties in individuals with tuberous sclerosis complex
Email m.shabetai@bham.ac.uk to participate in this study.
TSC Matters Post
Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?
Do you or your loved one suffer from epileptic seizures? Noema Pharma is developing basimglurant, a drug with a new mechanism of action and a potential for treatment of seizures associated with
FAQ
Financial Conflict of Interest Policy
The Public Health Service (PHS) has adopted regulations (42 CFR Part 50 Subpart F and 45 CFR Part 94) to provide a reasonable expectation that the design, conduct, and reporting
TSC Matters Post
April 2023 Message from the CEO
TSC Alliance President & CEO Kari Luther Rosbeck announces registration opening for the 2023 Regional TSC & LAM Conference Series co-hosted with The LAM Foundation, encourages everyone to participate in
TSC Matters Post
Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?
Do you or your loved one suffer from epileptic seizures? Noema Pharma is developing basimglurant, a drug with a new mechanism of action and a potential for treatment of seizures
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Transition Readiness Survey
Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago would like to invite you to participate in a research study on the readiness to transition
TSC Matters Post
Transition Readiness Survey
Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago would like to invite you to participate in a research study on the readiness to transition
Team Member
Liz Cassidy, MPH
Liz joined the TSC Alliance in October 2022. She has previous clinical research experience, including undergraduate research experience at The Catholic University of America, where she graduated in 2018. As an undergrad,
TSC Matters Post
Transition Readiness Survey
Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago would like to invite you to participate in a research study on the readiness to transition
TSC Matters Post
Transition Readiness Survey
Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago would like to invite you to participate in a research study on the readiness to transition
Testimonial
Leonard/Grabb Family
“Our family chose to participate in this initiative because we have seen the progress made over our son’s lifetime due to research advances.”
TSC Alert
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
Testimonial
Brtan Family
“We highly recommend any parent or TSC adult to participate in the process to seek cure of TSC.”
Testimonial
Russell Family
“The TSC Alliance’s mobile phlebotomy initiative made it easy for our daughter to participate safely and in the comfort of our own home.”
Resource
Episode 32: The 2022 World TSC Conference
In the first episode of TSC Now in 2022, host Dan Klein provides an overview of the upcoming 2022 World TSC Conference, co-hosted by Tuberous Sclerosis Complex International (TSCi), which
TSC Matters Post
Thank You Future Leaders Class of 2020-2021
The six young adults in the Future Leaders Class of 2020-2021 greatly exceeded the requirements of the program and have been instrumental in moving it forward. Too often young adults
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trial
See below for the ongoing trial.
TSC Matters Post
August Volunteer Opportunities
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Ongoing Quality of Life Study for Adults with TSC
See below for ongoing study.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trial
See below for the ongoing trial.
TSC Matters Post
June Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
Resource
Episode 23: Autism Spectrum Disorder in TSC and TACERN
In Episode 23 of TSC Now, host Dan Klein recognizes World Autism Month and Autism Acceptance Month by learning more about autism spectrum disorder (ASD) in tuberous sclerosis complex (TSC).
TSC Matters Post
Ongoing Quality of Life Study for Adults with TSC
See below for ongoing study.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trial
See below for the ongoing trial.
TSC Matters Post
April Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
February Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
December Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
Resource
Episode 18: Understanding COVID-19’s Impact on Those with TSC & LAM
In episode 18 of TSC Now, host Dan Klein talks to Nishant Gupta, MD, Associate Professor in the Division of Pulmonology, Critical Care and Sleep Medicine at the University of
TSC Matters Post
October Note from the CEO
This year has challenged us to come up with new ways to bring our community together, to empower those living with TSC and their loved ones and
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
October Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)
Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands and her
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.
TSC Matters Post
August Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
Resource
Episode 15: Managing Behaviors During COVID-19 (Part 2) + A New Partnership with SeizureTracker
In episode 15 of TSC Now, host Dan Klein continues exploring how to manage harmful and disruptive behaviors associated with TSC-associated neuropsychiatric disorders (TAND) during the ongoing COVID-19 pandemic. Then
TSC Matters Post
Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)
Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands and her
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.
TSC Matters Post
June Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
April Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.
TSC Matters Post
February Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.
TSC Matters Post
Ongoing Epilepsy Trials
See below for ongoing trials.
TSC Alert
Register Now: Curing the Epilepsies 2020
All stakeholders are invited to attend the upcoming NIH conference, “Curing the Epilepsies 2020: Setting Research Priorities.”
TSC Alert
Register Now: Curing the Epilepsies 2020
All stakeholders are invited to attend the upcoming NIH conference, “Curing the Epilepsies 2020: Setting Research Priorities.”
TSC Matters Post
Are you an Adult with TSC or a Caregiver of an Adult with TSC?
Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Netherlands are conducting a research study to develop a questionnaire to investigate the burden and restrictions
TSC Matters Post
Baby Brain Imaging and Behavior Study (Baby BIBS)
Researchers at the UCLA Center for Autism Research and Treatment (CART) are looking for families who have a child less than 3 years old and is diagnosed with TSC.
TSC Matters Post
Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas
We are currently conducting a clinical trial for individuals diagnosed with TSC with facial bumps called cutaneous angiofibromas. The goal of this study is to investigate if the study drug,
TSC Matters Post
Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)
Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston Children’s Hospital, Cincinnati Children’s Hospital Medical Center, University of Alabama at Birmingham, University of California at Los Angeles, University
TSC Matters Post
December Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Are you an adult with TSC or a caregiver of an adult with TSC?
Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Netherlands are conducting a research study to develop a questionnaire to investigate the burden and restrictions
TSC Matters Post
Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas
We are currently conducting a clinical trial for individuals diagnosed with TSC with facial bumps called cutaneous angiofibromas. The goal of this study is to investigate if the study drug,
TSC Matters Post
Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)
Enrollment still open! Where: TSC Clinical Research Consortium sites at Boston Children’s Hospital, Cincinnati Children’s Hospital Medical Center, University of Alabama at Birmingham, University of California at Los Angeles, University
TSC Matters Post
October Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
August Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Baby Brain Imaging and Behavior Study (Baby BIBS)
Researchers at the UCLA Center for Autism Research and Treatment (CART) are looking for families who have a child less than 3 years old and is diagnosed with TSC. The
TSC Matters Post
Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas
We are currently conducting a clinical trial for individuals diagnosed with TSC with facial bumps called cutaneous angiofibromas. The goal of this study is to investigate if the study drug,
TSC Matters Post
Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)
Enrollment goal might be reached by Sept 2019
TSC Matters Post
Baby Brain Imaging and Behavior Study (Baby BIBS)
Researchers at the UCLA Center for Autism Research and Treatment (CART) are looking for families who have a child less than 3 years old and is diagnosed with TSC. The
TSC Matters Post
Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)
Enrollment goal might be reached by Sept 2019
TSC Matters Post
April Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the