TSC Matters Post
December TSC Now Episode
In the December episode of TSC Now, a podcast by the TSC Alliance, Kelly Knupp, MD of the University of Colorado describes what infantile spasms (IS) are, why they are
TSC Matters Post
Meet Some of the TSC Alliance Research Grant Recipients
New research grants awarded by the TSC Alliance in 2020:
TSC Matters Post
Re-Watch All of the Virtual TSC & LAM Conference Sessions
Did you miss our three virtual conferences earlier this year? Catch up on all the previous sessions! Also, be sure to check out the Virtual Exhibit Hall for great resources from our
TSC Matters Post
Join Our Future Leaders for a Young Adults with TSC Webinar
Are you a Young Adult with TSC (age 17-25)? Then join us next week for a webinar presented by the TSC Alliance Future Leaders!
TSC Matters Post
Join Us for Baking for a TSC Cure
Saturday, December 12, 2020 • 6:00 pm ET Chef Rivera, Head Pastry Chef at Bachour Miami and Founder of Women Chefs 305, will lead an hour-long virtual baking class on Zoom starting at
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Register Your Interest in the International TSC Research Conference 2020
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. Learn More
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
UPDATE: The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (combatcovid.hhs.gov/). The portal is a
TSC Alert
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
TSC Alert
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled October 28-30, 2021. The conference will focus on structured,
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 Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, the TSC Alliance’s Science and Medical Committee, drawing on opinions from key leaders in TSC clinical care,
TSC Alert
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
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
Resource
Episode 17: Gene Therapy in TSC
In episode 17 of TSC Now, host Dan Klein talks to Xandra Breakefield, PhD, Professor of Neurology at Harvard Medical School and a geneticist, specializing in neurology & tadiology at
TSC Matters Post
Join Us For the Final Virtual TSC & LAM Conference on November 7!
The third and final Virtual TSC and LAM Conference on Saturday, November 7, 2020. Register now! Did you miss either of the first two virtual conferences? Catch up on all the
TSC Matters Post
Participate in a Worldwide Survey on Access to TSC Medications
Tuberous Sclerosis Complex International (TSCi) invites you to participate in a brief worldwide survey about accessing medications for tuberous sclerosis complex (TSC). The survey will take 5-10 minutes to complete.
TSC Matters Post
Participate in the TSC Biosample Repository Project
To better understand why people are impacted so differently by this disorder and with the aim to eventually be able to better predict its course, our organization invested in a
TSC Matters Post
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial
TSC Alert
2020 International TSC Conference Update
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. A virtual event will also take place
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee,
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients:
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
Funding Opportunity: Now Accepting Proposals for TSC Biosample Research
The TSC Alliance is pleased to announce a funding opportunity for Biosample Seed Grants to support research using blood, tissue, and buccal cells from the TSC Biosample Repository. The award may support
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial
TSC Alert
2020 International TSC Conference Update
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. A virtual event will also take place
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. We
TSC Alert
TSC Alliance Contributes Data to RDCA-DAP
The TSC Alliance has recently contributed data to The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP), funded by the U.S. Food and Drug Administration and developed by the Critical
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee,
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients:
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
Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial
TSC Alert
2020 International TSC Conference Update
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. A virtual event will also take place
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee,
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients:
TSC Alert
TSC Alliance Contributes Data to RDCA-DAP
The TSC Alliance has recently contributed data to The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP), funded by the U.S. Food and Drug Administration and developed by the Critical
TSC Alert
2020 International TSC Conference Update
The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. A virtual event will also take place
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
Update on TSC Biosample Repository Project
The TSC Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TSC
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients: The TSC Alliance is collecting clinical information in their TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee,
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
Behavioral Research – Open to families with children with and without TSC
Tell us about your child’s emotional outbursts
Resource
Episode 13: TSC Global Awareness Month in the Age of COVID-19
In episode 13 of TSC Now, host Dan Klein celebrates TSC Awareness Month and one full year of podcasting by once again reaching out to some of the Tuberous Sclerosis
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news,
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
Update on TSC Biosample Repository Project
Currently, biosample collections have been paused. However, patients with TSC can still participate in this initiative. The TSC Alliance is able to consent patients for the project via a 20-minute
TSC Alert
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients: The TSC Alliance is collecting clinical information in their TSC
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee
TSC Alert
Thank You TSC Nurses!
Resource
Episode 12: Living with TSC During COVID-19
In episode 12 of TSC Now, host Dan Klein does a deep dive on the ongoing COVID-19 crisis and its impact on the tuberous sclerosis complex (TSC) community. Throughout the
TSC Matters Post
Behavioral Research – Open to families with children with and without TSC
Tell us about your child’s emotional outbursts
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC.
TSC Matters Post
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
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
Moving TSC Research Forward in the Face of COVID-19
On Monday, April 6, TSC Alliance staff members from our science department presented on how we are continuing to advance critical TSC research during the COVID-19 pandemic.
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Update on TSC Biosample Repository and Natural History Database Project
Although collections are paused due to COVID-19 concerns, the TSC Alliance is able to complete the consent process with you remotely now and complete collections later this year. For more
TSC Matters Post
TSC Alliance COVID-19 & TSC Resource
The TSC Alliance has assembled a wide range of information and resources about the COVID-19 pandemic for people with TSC, their families and loved ones, and medical professionals. These include
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news, FDA
TSC Alert
Register Your Interest for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed.
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee
TSC Alert
Moving TSC Research Forward in the Face of COVID-19
TSC Alliance staff members from our science department share how we are continuing to move TSC research forward during the COVID-19 pandemic.
Resource
Episode 11: A #March4TSCresearch Recap & Update on COVID-19
In episode 11 of TSC Now, host Dan Klein recaps our annual March on Capitol Hill, which took place on March 4, 2020 in Washington, DC and brought together more
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news, FDA
TSC Alert
Register Your Interest for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TSC Alliance’s Science and Medical Committee
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC.
TSC Matters Post
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
#March4TSCresearch Update
On March 4, 2020 more than 120 volunteer advocates from across the country will gather in Washington, DC for the annual March on Capitol Hill to advocate for continued funding
TSC Matters Post
Seeking Volunteers for the TSC Biosample Repository
To learn more about donating to the TSC Biosample Repository click here or contact Jo Anne Nakagawa at jnakagawa@tscalliance.org or (240) 648-4654.
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
TSC Alliance Announces New Improving Partnerships and Lives Grant
The TSC Alliance Improving Partnerships and Improving Lives Grant (IPaLG) is designed to develop new partnerships and provide much-needed resources to families/individuals living with TSC. Funding decisions are made through
TSC Alert
TSC Alliance Partners with NeurologyLive™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up-to-date on clinical trial news, FDA
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
Register Your Interest for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
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
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
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
Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)
A new clinical trial for individuals with TSC and facial angiofibromas who are 6 – 65 years old. Individuals who have used oral rapamycin/sirolimus, everolimus, or temsirolimus within 3 months
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
We are Seeking Volunteers for the TSC Biosample Repository
The purpose of this research project is to collect a sample of blood, tissue, fluid or other types of bodily samples from children and adults with tuberous sclerosis complex (TSC).
TSC Matters Post
Join Us for a Free Webinar on TSC-Associated Neuropsychiatric Disorders (TAND)
TAND Webinar: Effective Behavioral Treatments Presented by Dr. Nathan Call
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Listen and Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
Changes to TSC Matters in 2020
The TSC Alliance is transitioning to a new email platform in 2020. Be on the lookout for an email early in January asking you to update your information and resubscribe
TSC Alert
Important Update about TSC Alert in 2020
Starting in January, the TSC Alert e-newsletter will be sent out on the second Friday of the month. Furthermore, the TSC Alliance is transitioning to a new email platform in
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
New Research Article Available on the TOSCA Registry for TSC
The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The
TSC Alert
Connect with the TSC Alliance at AES
There are several opportunities to meet with TSC Alliance representatives during the 2019 American Epilepsy Society Annual Meeting:
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Join Us at the TSC Alliance and TSC Center of Maryland AES Reception
Friday, December 6, 2019 7 to 9 pm Health Sciences Research Facility III – Atrium 670 West Baltimore Street Baltimore, MD 21201
TSC Matters Post
Meet Team TSC
On Sunday, November 3, 2019, 11 members of Team TSC will be running in the 2019 TCS New York City Marathon on behalf of the TSC Alliance. To date, our Team TSC
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
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
Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC
A new clinical trial for individuals with TSC and facial angiofibromas who are 6 – 65 years old. Individuals who have used oral rapamycin/sirolimus, everolimus, or temsirolimus within 3 months
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
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
TSC Alliance Announces New TSC Centers of Excellence
The TSC Alliance is pleased to introduce our new “TSC Center of Excellence” designation for qualifying TSC Clinics. Each TSC Center of Excellence must submit an application specifying how it
TSC Matters Post
Join Us at the Regional TSC & LAM Conference in Los Angeles!
The fifth and final Regional TSC and LAM Conference, co-hosted with The LAM Foundation, is Saturday, November 2 starting at 8:30 AM at the UCLA Meyer & Renee Luskin Conference
TSC Matters Post
Upcoming Step Forward to Cure TSC Walks
Sometimes simple things can make a huge difference. Like simple steps, taken by caring people on a mission to improve the lives of those living with tuberous sclerosis complex (TSC).
TSC Matters Post
TSC Research: Our Vision for 2020
As part of our 45th Anniversary Celebration, during the Fund a Cure portion of the live auction we raised funds to support two important research initiatives that we believe will
TSC Matters Post
Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
What TSC Means to Me Drawing Contest
In September, the TSC Alliance of Indiana held a “What Tuberous Sclerosis Complex (TSC) Means to Me” Drawing Contest for family members, caregivers, friends, and individuals with TSC. Contestants were asked
Resource
Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND)
In episode 6 of TSCnow, host Dan Klein talks to Petrus de Vries, MBChB, MRCPsych, PhD, Sue Struengmann Professor of Child and Adolescent Psychiatry at the University of Capetown in
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
TSC Alert
TSC Biosamples Available at No Cost to Researchers
re you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Last Call: Funding Opportunity Announcement: Seed Grants to Utilize TSC Biosamples
Again in 2019, the TSC Alliance is announcing a funding opportunity for Biosample Seed Grants to support research using blood, tissue, and buccal cells from the TSC Biosample Repository. The
Resource
Episode 5: TSC Kidney Manifestations & Consensus Guidelines for Surveillance and Treatment
In episode 5 of TSC Now, Dan Klein talks to Dr. John Bissler, MD, Clinic Director of the Tuberous Sclerosis Complex Center of Excellence located at Le Bonheur Children’s Hospital,
TSC Alert
Funding Opportunity Announcement: Seed Grants to Utilize TSC Biosamples
Again in 2019, the TSC Alliance is announcing a funding opportunity for Biosample Seed Grants to support research using blood, tissue, and buccal cells from the TSC Biosample Repository. The
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
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Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School
In the fourth episode of TSC Now, host Dan Klein talks to Lilian Ansari, MS, Special Needs Advocate, Co-Chair of the TS Alliance of Northern California and Education Parent Mentor. They
TSC Matters Post
2019 International TSC Research Conference Review
The 2019 International TSC Research Conference: Changing the Course of TSC, co-sponsored with Tuberous Sclerosis Canada Sclérose Tubéreuse (TSCST) and the TSC Alliance of Mexico, was held June 20-22, 2019 in Toronto, Canada. The conference brought together 251 people from
TSC Matters Post
Join the TSC Alliance at Our 45th Anniversary Gala in New York City
Early bird tickets available until September 9, 2019. Learn More Get Your Tickets Now
TSC Matters Post
Join Us at the Regional TSC & LAM Conference in Chicago!
The third Regional TSC and LAM Conference, co-hosted with The LAM Foundation, is Saturday, September 7 starting at 8:30 AM at the Healtyh Science Campus at Loyola University in Chicago,
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Listen to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND),
TSC Matters Post
Join Team TSC and Run the NYC Marathon!
There are still a few spots left to run with Team TSC in the 2019 TCS New York City Marathon on November 3, 2019. Learn More. Sign Up to Run with
TSC Matters Post
Upcoming Step Forward to Cure TSC Walks
Sometimes simple things can make a huge difference. Like simple steps, taken by caring people on a mission to improve the lives of those living with tuberous sclerosis complex (TSC).
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
TSC Matters Post
Dose-Ranging Efficacy and Safety Study of Topical Rapamycin Cream for Facial Angiofibroma Associated with Tuberous Sclerosis Complex (TSC)
A new clinical trial for individuals with TSC and facial angiofibromas who are 6 – 65 years old. Individuals who have used oral rapamycin/sirolimus, everolimus, or temsirolimus within 3 months
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 Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference will be organized
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
2019 International TSC Research Conference Review
Thank you to everyone who attended the 2019 International TSC Research Conference: Changing the Course of TSC in Toronto. You can view the Conference Program Book here. The conference, co-sponsored with Tuberous Sclerosis Canada Sclérose
TSC Alert
Contribute to a Study About Standard Neurological Care in TSC Children
Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic
Resource
Episode 3: The 2019 International TSC Research Conference
In the third episode of TSC Now, host Dan Klein, Director of Digital Platforms for the Tuberous Sclerosis Alliance, talks to the two co-chairs of the 2019 International TSC Research Conference: Changing
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples that are tied to phenotypic data. In
TSC Alert
2019 International TSC Research Conference Post Survey
Thank you to everyone who attended the 2019 International TSC Research Conference: Changing the Course of TSC in Toronto. You can view the Conference Program Book here. If you attended the conference please
TSC Alert
Save the Date for the 2020 International TSC Research Conference
The International Tuberous Sclerosis Complex Research Conference 2020: A Vision for the Future will take place November 12-14, 2020 at the Royal College of Physicians in London, UK. The conference
Resource
Episode 2: Epilepsy in TSC and Laser Ablation Surgery with Dr. Daniel Curry
In the second episode of TSC Now host Dan Klein talks to Dr. Daniel Curry, Director of Functional Neurosurgery and Epilepsy Surgery at Texas Children’s Hospital in Houston. They discuss
TSC Matters Post
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC
TSC Matters Post
Phenotypic Variability in Tuberous Sclerosis Complex (TSC)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
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
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
TSC Clinical Research Consortium Update
To initiate and implement clinical studies more quickly and effectively, researchers from five TSC Clinics together with the TSC Alliance formed the TSC Clinical Research Consortium in 2012. Since then,
TSC Matters Post
Join Team TSC and Run the NYC Marathon!
Team TSC is a dedicated group of people running on behalf of the 50,000 people in the US and 1 million worldwide with tuberous sclerosis complex (TSC). The TSC Alliance
TSC Matters Post
2019 Global TSC Awareness Day Celebration Held at Foothill Oaks Elementary School in Sacramento, CA
Jessica Hilderbrand, Resource Specialist, held an event to celebrate one of her students who has TSC. More than 200 students in grades 3 to 6 watched the Turbo & Scott
TSC Matters Post
#March4TSCresearch Update
We are excited to report over a third of the Senate signed the FY20 Dear Colleague Letter, and it closed with a record 35 signatures! The previous high was 29.
TSC Matters Post
Subscribe to TSC Now
TSC Now is the TSC Alliance’s podcast series, which features interviews with clinicians, researchers, TSC Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders
TSC Matters Post
Upcoming Step Forward to Cure TSC Walks
Sometimes simple things can make a huge difference. Like simple steps, taken by caring people on a mission to improve the lives of those living with tuberous sclerosis complex (TSC).
TSC Matters Post
St. Louis Regional TSC & LAM Conference
The TSC Alliance and The LAM Foundation are co-hosting four more Regional TSC & LAM Conferences in 2019! Focusing on patients and caregivers, conferences will take place in St. Louis (June 15), Chicago (September 7), Atlanta (September 21), and Los
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples that are tied to phenotypic data. In
TSC Alert
Last Chance: Register Today for the 2019 International TSC Research Conference
Register now for the 2019 International Tuberous Sclerosis Complex Research Conference: Changing the Course of TSC. We look forward to seeing you June 20-22 at the Chelsea Hotel Toronto! The
Resource
Episode 1: TSC Global Day, 45th Anniversary and the Future of TSC Research
Welcome to the debut episode of TSC Now, a podcast from the Tuberous Sclerosis Alliance! In this episode Dan Klein, Director of Digital Platforms, talked to Jennifer Flinn from TS
TSC Alert
April TSC Preclinical Consortium Meeting
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.
TSC Alert
Register Today for the 2019 International TSC Research Conference
Register now for the 2019 International Tuberous Sclerosis Complex Research Conference: Changing the Course of TSC. We look forward to seeing you June 20-22 at the Chelsea Hotel Toronto! The
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples that are tied to phenotypic data. In
TSC Alert
Save the Date: 2020 International TSC Research Conference Announced
The 2020 International Tuberous Sclerosis Complex Research Conference will take place at the Royal College of Physicians in London, UK November 12-14, 2020.
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples that are tied to phenotypic data. In
TSC Alert
Register Today for the 2019 International TSC Research Conference
Register now for the 2019 International Tuberous Sclerosis Complex Research Conference: Changing the Course of TSC. We look forward to seeing you June 20-22 at the Chelsea Hotel Toronto! The 2019
TSC Alert
Save the Date: 2020 International TSC Research Conference Announced
The 2020 International Tuberous Sclerosis Complex Research Conference will take place at the Royal College of Physicians in London, UK November 12-14, 2020.
TSC Matters Post
TSC Preclinical Consortium Meeting
The TSC Alliance launched the TSC Preclinical Consortium in 2016, in collaboration with industry and academia, to test the efficacy of candidate therapeutic drugs and advance the best to the clinical stage.
TSC Matters Post
Upcoming Step Forward to Cure TSC Walks
“And that is how change happens. One gesture. One person. One moment at a time.” ― Libba Bray, The Sweet Far Thing Sometimes simple things can make a huge difference.
TSC Matters Post
#March4TSCresearch Update
Thanks to the incredible advocacy of our volunteers, over half of the House signed the FY20 House Dear Colleague Letter! It closed with 232 signatures, making it our most signed
TSC Matters Post
Boston Regional TSC & LAM Conference
The TSC Alliance and The LAM Foundation are co-hosting five Regional TSC & LAM Conferences in 2019! Focusing on patients and caregivers, conferences will take place in Boston (April 13), St. Louis (June 15), Chicago (September 7), Atlanta (September 21), and Los
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
Clinical Trial for Individuals Diagnosed with Tuberous Sclerosis Complex (TSC) and Cutaneous Angiofibromas (Valid through June 2019)
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
Phenotypic Variability in Tuberous Sclerosis Complex (TSC) (Study Valid through September 1, 2021)
Dr. Narayanan and colleagues at the Translational Genomics Research Institute (TGen) in Phoenix, Arizona are conducting a research study aimed at identifying genetic modifiers of disease severity in TSC. For
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
TSC Biosamples Available at No Cost to Researchers
Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases,
TSC Alert
Call for Proposals: TSC2+/- A/J Mice – Due October 22
The TSC Preclinical Consortium is currently running three animal models, one of which is the Tsc2+/- A/J strain (Woodrum et al 2010, Guo and Kwiatkowski 2013). Large cohorts of age-matched mice are
TSC Alert
Seed Grants for TSC Biosample Research – Due August 13
The TSC Alliance is soliciting applications for seed funding for research using samples from the TSC Biosample Repository.
TSC Alert
Call for Proposals: TSC2+/- A/J mice – Due May 4
The TSC Preclinical Consortium is currently running three animal models, one of which is the Tsc2+/- A/J strain (Woodrum et al 2010, Guo and Kwiatkowski 2013). A/J mice are challenging
TSC Alert
Now Accepting Letters of Intent for TSC Alliance Grants and Postdoctoral Fellowships
We invite researchers worldwide to apply for a Research Grant or Postdoctoral Fellowship from the TSC Alliance. Letters of Intent are due by May 7, 2018.
TSC Alert
New Sample Types Available in TSC Biosample Repository
The TSC Alliance signed an agreement with Erasmus MC to include the TSC1- and TSC2-knockout HEK293T cell lines from the Nellist laboratory in the TSC Biosample Repository. The TSC Alliance can distribute
TSC Alert
New Clinics Recognized by TSC Alliance Board of Directors
The TSC Alliance Board of Directors recently recognized 17 new TSC clinics, including the first TSC clinic in Mexico. Clinics recognized by the TSC Alliance must adhere to the TSC
TSC Alert
Serial Samples in the TSC Biosample Repository
Having entered its second year, the TSC Biosample Repository is beginning to receive serial blood samples from individuals who donated one year ago. Although we have only three such serial
TSC Alert
AES 2017: TSC Preclinical Consortium Presentation on December 3
If you will be attending the American Epilepsy Society meeting in Washington, DC in December, please join us for TSC Alliance Chief Scientific Officer Dr. Steve Roberds’ presentation on the
TSC Alert
TSC Biosample Repository Update – August 2017
Our TSC Biosample Repository now has 329 biosamples, including 203 blood, buccal, or tissue samples from participants enrolled in the Natural History Database project. The Biosample Repository also includes blood samples
TSC Alert
TSC Biosample Repository Update – June 2017
Our TSC Biosample Repository now has 258 biosamples, including 143 blood or buccal samples from participants enrolled in the Natural History Database project. The Biosample Repository also includes blood samples from
TSC Alert
Recap: Early-Stage TSC Researcher Meeting
A group of early-career researchers held the Second Early-Stage Tuberous Sclerosis Complex Researcher Meeting on June 21, 2017, the day before the International Research Conference on TSC and LAM: Innovating
TSC Alert
Recap: 2017 International Research Conference on TSC and LAM
The 2017 International Research Conference on TSC and LAM: Innovating Through Partnerships was an astounding success! More than 230 researchers, clinicians, nurses and advocacy group leaders attended, coming from 27
TSC Alert
TSCRP Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is accepting applications for the fiscal year 2017 grant cycle. Letters of intent are due July 11, 2017. Three award mechanisms are available this
TSC Alert
Early-Stage TSC Researchers Meeting – Deadline for Abstracts is May 8
Early-career researchers are invited to attend the Second Early-Stage Tuberous Sclerosis Complex Researcher Meeting on June 21, 2017. This meeting is organized by an international collective of early-career researchers and
TSC Alert
TSC Preclinical Consortium Accepting New Compounds
The TSC Preclinical Consortium invites researchers and industry partners to request testing of new compounds.
TSC Alert
Register for the 2017 International Research Conference on TSC and LAM
TSC Alliance and The LAM Foundation invite you to register for the 2017 International Research Conference on TSC and LAM, to be held June 22-24 at the Hyatt Regency on
TSC Alert
The New TSC Alert
Welcome to the new TSC Alert, a monthly electronic newsletter for TSC researchers. It provides updates on TSC research resources, conferences and clinical studies, as well as news that may be
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TSC Alert
TSC Alert
TSC Biosample Repository Update – March 2017
Our TSC Biosample Repository now has 203 blood samples from individuals with TSC (and some parents of children with TSC who do not have TSC themselves). These samples are linked to
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Find a TSC Clinic
The TSC Alliance supports the vital role a tuberous sclerosis complex (TSC) clinic can play in improving the lives of TSC patients. Use the resources below to find a TSC
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About TSC
Tuberous sclerosis complex (TSC) is a complicated disease that manifests differently from person to person. But thanks to earlier diagnosis and better treatments, those affected by TSC are living healthier,
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Family-focused introduction to the TAND consensus recommendations
Access the Family-focused introduction to the TAND consensus recommendations here. Learn more on the TAND Consortium website.
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העמותה הישראלית לטוברוס סקלרוזיס
View in English מטרות העמותה העיקריות 1. להיות שותפים פעילים למציאת מרפא לטוברוס סקלרוזיס 2. לפעול למען הקלה בהתמודדות עם טוברוס סקלרוזיס, למאובחנים ולבני משפחותיהם 3. לשתף בידע ולהפיץ מידע
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Tuberous Sclerosis Alliance of Israel
עברית Main Goals of the Association To be active partners in the search for a cure for tuberous sclerosis complex (TSC) To empower people coping with the impact of TSC
TSC Research Matters Post
Navigating the Diagnostic Journey: What Families Face After a Tuberous Sclerosis Complex Diagnosis
When a child is diagnosed with tuberous sclerosis complex (TSC)—a genetic disorder that can affect multiple organs and cause seizures, developmental delays, and autism—families suddenly find themselves navigating a complex
TSC Research Matters Post
Study Explores Similarities between Tuberous Sclerosis Complex and Alzheimer’s Disease
This study investigates a brain disorder called tuberous sclerosis complex (TSC) and its connection to a type of abnormal protein buildup known as tau (also referred to as tauopathy), which
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Regulating Together Webinar Recording 1/15/26
Emotion dysregulation is a common challenge for individuals with tuberous sclerosis complex (TSC) and TSC-Associated Neuropsychiatric Disorders (TAND). This webinar will introduce the Regulating Together program, including its goals and structure. Then the
Event
Comedy for a Cure®
The 25th Annual Comedy for A Cure® will be held Sunday, April 19, 2026 at the iconic Irvine Improv at Irvine Spectrum Center. This year’s headliner, the legendary Rita Rudner, will be joined by Mo Collins,
FAQ
2025
FY 25 (Jan 1 – Dec 31, 2025) Welcome to BoardLink, which provides the most up-to-date information for the TSC Alliance® Board of Directors, including meeting documents, committee meeting minutes and other
News Item
Government Action Alert!
Dear Members of the TSC Community, We understand that the House and Senate Appropriations Committees are currently negotiating a final FY26 Defense Appropriations Act. You will recall that the House
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Episode 52: Prolonged Seizures (Sponsored by UCB)
In a special episode of TSC Now, Dan interviews Bridgett Langstaff, mom to Jude, a 17-year-old living with tuberous sclerosis complex (TSC) and epilepsy. Bridgett shares Jude’s diagnosis story and
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2025 Transition Webinar Series – The Psychological Impact on Caregivers
Resources from the webinar: Signs and Symptoms of Caregiver Burnout Finding your Caregiver Zone How to Help me Worksheet ABCs of Respite
FAQ
View our 2025 Team Members
TCS NYC Marathon Runners David Team TSC VIEW MY PAGE Diana In Honor of Atrina VIEW MY PAGE Emily Team TSC VIEW MY PAGE Gadi Team TSC VIEW MY PAGE
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
Event
Ask an Advocate – February 2026
Join us for an Ask an Advocate session! Join Wendy Anderson, TSC Alliance Education Peer Mentor, on Monday, February 9, 2026, at 8 pm ET as she leads a focused
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Episode 51: Drug-Resistant Epilepsy (Sponsored by LivaNova)
November is Epilepsy Awareness Month, and to help raise awareness, TSC Now host Dan Klein talks to Starr Phipps, an adult living with drug-resistant epilepsy. She shares her story, including
TSC Alert
Nominate a someone you know for a Volunteer Award!
The TSC Alliance thrives on the service of selfless individuals across the country who give of their time, talent, and resources to help us improve quality of life for
TSC Alert
End of Year Reminders
As we enter the holiday season and the end of 2025, it’s a good time for many to remember January 2026 may begin a new medical insurance year or change
Event
Adult Topic Call – November 2026
The November topic call will take place on Wednesday, November 18, 2026 at 8 pm ET. Adult topic calls provide a forum for independent or semi-independent adults with TSC to
Event
Adult Topic Call – October 2026
The October topic call will take place on Wednesday, October 21, 2026 at 8 pm ET. Adult topic calls provide a forum for independent or semi-independent adults with TSC to
Event
Adult Topic Call – September 2026
The September topic call will take place on Wednesday, September 16, 2026 at 8 pm ET. Adult topic calls provide a forum for independent or semi-independent adults with TSC to
Event
Adult Topic Call – May 2026
The May topic call will take place on Wednesday, May 20, 2026 at 8 pm ET. Adult topic calls provide a forum for independent or semi-independent adults with TSC to
Event
Adult Topic Call – April 2026
The April topic call will take place on Wednesday, April 15, 2026 at 8 pm ET. Adult topic calls provide a forum for independent or semi-independent adults with TSC to
Event
Adult Topic Call – March 2026
The March topic call will take place on Wednesday, March 18, 2026 at 8 pm ET. Adult topic calls provide a forum for independent or semi-independent adults with TSC to
TSC Research Matters Post
Fierce Advocates for Life-Changing Research – Lesley and Alex Holmes
Lesley and Alex Holmes were thrilled when they learned Lesley was pregnant with their first child in 2018. But their joy turned to despair when Lesley underwent a prenatal scan at
TSC Research Matters Post
Exploring New Frontiers of Research on TAND – Elizabeth Thiele, MD, PhD
After twenty years running the Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital, Dr. Elizabeth Thiele is most excited about the increased focus, both clinically and in research,
TSC Research Matters Post
Research Reveals Extracellular Vesicles as Promising Biomarkers for Tuberous Sclerosis Complex
A new study has found that extracellular vesicles (EVs)—tiny, cell-derived particles circulating in the bloodstream—may serve as effective biomarkers for diagnosing and monitoring tuberous sclerosis complex (TSC). The research shows
TSC Research Matters Post
Study Identifies Key Inflammatory Biomarkers Linked to Epilepsy in Tuberous Sclerosis Complex
A new study has identified a distinct inflammatory signature in people with tuberous sclerosis complex (TSC), pointing to several blood-based biomarkers—including glial fibrillary acidic protein (GFAP)—that could help predict active
Event
2025 Transition Webinar Series – The Psychological impact on Caregivers
Join Michele D. Della Costa, MS, LMFT-QS, on Thursday, December 18, 2025 at 7:00 pm ET as she leads a valuable discussion on the psychological impact on caregivers of semi-independent and dependent
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Drug Development Resources
Dean Aguiar, PhD • daguiar@tscalliance.org Vice President, Translational Research Zoë Fuchs • zfuchs@tscalliance.org Senior Manager, Translational Research TSC Alliance Preclinical Consortium American Epilepsy Society • Poster in Collaboration
TSC Research Matters Post
Why I give: Philanthropy with a Businessman’s Touch
David Coit’s journey to becoming a dedicated member of the TSC Alliance was both personal and professional. David shared wonderful Maine summers with his nephew Thorpe, who was profoundly affected
TSC Research Matters Post
Understanding the Role of Macrophages in Lymphangioleiomyomatosis (LAM)
In a recent study, researchers investigated the immune microenvironment in Lymphangioleiomyomatosis (LAM), specifically focusing on macrophages, a type of immune cell, to explore potential targets for treatment. LAM, a rare,
TSC Research Matters Post
Impact of SUDEP on Mortality in Tuberous Sclerosis Complex
Two recent papers looked at distinct sources of data to understand causes of premature death in people living with tuberous sclerosis complex (TSC). Both groups of researchers concluded that Sudden
Event
34th Annual Cookin’ Up a Cure
Thirty-four years ago, Pamela’s son Joey had his first seizure at just six months old. It was then that their family heard the life-changing words: “Your child has Tuberous Sclerosis
News Item
Urgent Government Action Needed
We wanted to share with you a formal statement and action alert we received from our partners at The Arc concerning changes at the Department of Education which could have
TSC Research Matters Post
Understanding Disclosure of Tuberous Sclerosis Complex to Romantic Partners
This research paper explores the complex issue of disclosing a tuberous sclerosis complex (TSC) diagnosis to romantic partners, focusing on the factors that influence individuals’ decisions to share this personal
TSC Research Matters Post
Epilepsy Surgery in Tuberous Sclerosis Complex: A Real-World Study
This research paper presents a comprehensive study on epilepsy surgery outcomes of individuals with tuberous sclerosis complex (TSC) using the TSC Alliance’s TSC Natural History Database. The authors found that
TSC Research Matters Post
Why I Give: This Warrior Grandma is All In
When she learned that her infant granddaughter, Isabel, might have tuberous sclerosis complex (TSC), Diane McSwain went into warrior mode. Doctors suspected TSC even while her daughter, Kelly, was pregnant.
TSC Research Matters Post
Kinsley’s Story
Bailey Green was determined to give her daughter Kinsley the best life possible, despite her TSC diagnosis. But a session with a genetic counselor led to a new and unexpected
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2025 TCS New York City Marathon
The TSC Alliance is thrilled to have five Team TSC athletes participating in the 2025 TCS New York City Marathon on Sunday, November 2, 2025. These passionate individuals will take
TSC Research Matters Post
Understanding the Impact of Seizures on Development in Tuberous Sclerosis Complex
In a recently published study, researchers found that accumulated seizure burden, rather than age of seizure onset, is a significant predictor of neurodevelopmental outcomes at 36 months of age. These
TSC Research Matters Post
Why We Give: A Passion for Research
Stephanie and Tom McCann watched helplessly as their infant daughter, Claire, suffered infantile spasms and seizures, unaware these were signs of tuberous sclerosis complex (TSC). At the hospital, they pushed
TSC Research Matters Post
Living His Dream: Bear plays Banana-ball
The TSC Alliance is working to create a future where everyone affected by sclerosis complex (TSC) can live their fullest lives. Bear Burkhalter exemplifies this vision. Even while facing a
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Member Notices
2025 Annual Meeting of the Membership The annual meeting of the membership will be held at the Silver Spring Civic Building – 1 Veterans Pl, Ellsworth Room, Silver Spring, MD,
Team Member
Marisa Acierno
Marisa joined the TSC Alliance in June 2025 and brings a deep commitment to community-led advocacy. Prior to joining the TSC Alliance, Marisa worked as a social science researcher, collaborating
Resource
Ask an Advocate Session 6/9/25
This Ask an Advocate session is the first of a two-part series with TSC Alliance Education Peer Mentor Alexandra Dahlgren. In this session she discusses sensory processing and the four
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Power Hour: Understanding Neurodevelopmental Disorders After Epilepsy Surgery
Join the Pediatric Epilepsy Surgery Alliance for a special webinar with Dr. Shafali Jeste, Power Hour: Understanding Neurodevelopmental Disorders After Epilepsy Surgery, on Monday, June 30, 2025, at 2 pm PT. This webinar is co-hosted
TSC Research Matters Post
Brendan Manning: Unraveling the cell’s inner workings
For Brendan Manning, PhD, today’s advances in basic science are the stepping stones to the next breakthrough in treating tuberous sclerosis complex (TSC). Manning has spent the last 25 years researching
TSC Research Matters Post
Searching for Blood-based Biomarkers for Kidney Angiomyolipoma and Cysts in Tuberous Sclerosis Complex
Newly published research shows the feasibility of finding blood-based methods to detect kidney problems in individuals with tuberous sclerosis complex (TSC). Kidney issues in TSC are significant because they can
TSC Research Matters Post
Understanding Tuberous Sclerosis Complex Through Phenotypic Clustering
In a new study using the TSC Alliance’s Natural History Database, researchers observed that different clinical diagnoses of tuberous sclerosis complex (TSC) may commonly co-occur, or cluster, in varying groups
TSC Research Matters Post
Why I give: For Helen and others like her
When Brittany Smith learned that her infant daughter Helen had tuberous sclerosis complex (TSC), she felt shattered. “It was devastating. It was so sad, because we knew it meant that
Event
2025 Transition Webinar Series – Maximizing Independence and Financial Security: A Comprehensive Guide to ABLE Accounts for Individuals with Disabilities
Join the TSC Alliance for the third webinar of the 2025 Transition Webinar Series! This webinar will take place on Tuesday, June 17, 2025 at 7 pm ET. This webinar
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Terms of Use
Approved by Executive Committee: May 2, 2025 The following Terms of Use are entered into by and between You and the TSC Alliance (the “TSC Alliance”, “we”, or “us”). The
FAQ
Community Surveys
Cardiac Rhabdomyomas in Pregnancy Survey If you have had a fetus or child with cardiac rhabdomyoma associated with tuberous sclerosis complex (TSC) that was diagnosed during pregnancy, please consider completing
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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
FAQ
Perinatal Team
Co-Leaders Sarah Weatherspoon, MD, LeBonheur Children’s Hospital Stephanie Randle, MD, Seattle Children’s Hospital Heather Radtke, MS, CGC, TSC Alliance Core Team Rebecca Beroukhim, MD, Boston Children’s Hospital Asim Choudhri, MD,
FAQ
Reproductive Team
Co-Leaders Lara Friel, MD, PhD, UT Health Houston Lyndsay Harshman, MD, University of Iowa Heather Radtke, MS, CGC, TSC Alliance Core Team Derek Bauer, MD, University of Rochester Medical Center
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Future Leaders Program
Future Leaders are a group of individuals ages 17 through 27 including young adults with TSC, siblings of someone with TSC, or other relatives of someone with TSC who are
Resource
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
Participate in a Caregiver Survey!
Global Perspectives, specialists in recruiting caregivers and patients for scientific studies, are currently looking for caregivers of individuals living with tuberous sclerosis complex (TSC). The purpose of this study is
TSC Matters Post
Reproductive and Perinatal Health Initiative – Participate in the survey here
The TSC Alliance has launched a Reproductive and Perinatal Health Initiative committed to improving care provided to women with TSC before and during pregnancy. If you are a woman or
TSC Research Matters Post
The Reason for Giving: Honey Amado
Micah Amado was born in 1984 with a quick wit and a kind heart. His mother, Honey Amado, knows this better than anyone. They had like sensibilities, in humor and candor,
TSC Research Matters Post
A conversation with Steve Roberds, PhD
TSC Alliance Chief Scientific Officer Steve Roberds, PhD, leads the development and execution of the TSC Alliance’s research strategy through partnerships and conversations with all stakeholders, including individuals and families
Team Member
Jamie Saylor
Jamie joined the TSC Alliance team in February 2025 as Chief Financial Officer. In this role, Jamie is responsible for overseeing the financial and accounting operations of the organization, including
News Item
Reproductive and Perinatal Health Initiative – Participate in the survey here!
The TSC Alliance has launched a Reproductive and Perinatal Health Initiative committed to improving care provided to women with TSC before and during pregnancy. If you are a woman or
TSC Alert
Reproductive and Perinatal Health Initiative
The TSC Alliance has launched a Reproductive and Perinatal Health Initiative committed to improving care provided to women with TSC before and during pregnancy. If you are a woman or
FAQ
Sudden Unexpected Death in Epilepsy (SUDEP) Quality Improvement Initiative
The Sudden Unexpected Death in Epilepsy (SUDEP) Quality Improvement Initiative aims to evaluate current communication among healthcare providers and assess the knowledge and perceptions of patients, families, and caregivers about
FAQ
Reproductive and Perinatal Health Initiative
The Reproductive and Perinatal Health (RPH) Initiative focuses on identifying key priorities associated with maternal fetal pregnancy-related complications in TSC and establishing recommendations for reproductive and perinatal care. The first phase
FAQ
Reproductive and Perinatal Health Initiative
The Reproductive and Perinatal Health (RPH) Initiative focuses on identifying key priorities associated with maternal fetal pregnancy-related complications in TSC and establishing recommendations for reproductive and perinatal care. The TSC Alliance
Resource
Ask an Advocate Session – 2/10/25
This session featured TSC Alliance Education Peer Mentor Deanna Wall, MHA, Clinical Research Coordinator Sr. at the Huntsman Mental Health Institute.
Event
Ask an Advocate
Join us on August 11 at 8 pm ET for our Ask an Advocate call featuring the second half of a two-part series with TSC Alliance Education Peer Mentor Alexandra Dahlgren.
Event
Ask an Advocate
Join us on June 9 at 8 pm ET for Ask an Advocate, featuring the first of a two-part series with TSC Alliance Education Peer Mentor Alexandra Dahlgren. She will discuss
Event
2025 Transition Webinar
Join the TSC Alliance for the 2025 Transition Webinar Series! The first webinar of a six-part series on transitioning to adulthood will take place on Thursday, February 13, 2025
FAQ
2024
Fiscal Year 2024 (Jan 1 – Dec 31, 2024) FALL Board of Directors Meeting, october 24, 2024 October 2024 Board Book Finance Supplement I Finance Supplement J Spring Board of
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Frequently Asked Questions (FAQ’s)
ABOUT | ONBOARDING | CURRENT VOLUNTEERS | NETWORKING | RECOGNITION | SUPPORT | MARCH ON CAPITOL HILL | FAQ’s Frequently Asked Questions (FAQ) Our FAQ section is designed to help
FAQ
Zoom Backgrounds
To download the Zoom background, right click the image and click “Save image as…”. See below images for instructions on how to use a background in Zoom. Instructions for uploading
FAQ
E-Packet and Dear Colleague Letters
Congressional E-Packet FY26 TSCRP Justification TSC and Related Disorders Pathway TSC/TSC Alliance Information CDMRP TSCRP Overview Please note: the Dear Colleague Letters below are from LAST FISCAL YEAR. Final Senate
FAQ
View our 2024 team members
Full Marathon – Team Funds Raised $20,741.67 Joshua Cohen In Honor of Elliot Cohen raised $5,406.30 VIEW MY PAGE Jeffrey Perry In memory of Andi Michelle Perry VIEW MY PAGE
FAQ
Preparation Materials
2025 Sample TSC Family Letter 2025 Sample Appointment Request Text Virtual Story Card Template – Learn how to create your own here. Training Information Key Talking Points Myths and Facts
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About
ABOUT | ONBOARDING | CURRENT VOLUNTEERS | NETWORKING | RECOGNITION | SUPPORT | MARCH ON CAPITOL HILL | FAQ’s What is the Community Leadership Hub? Community Leadership Hub—a dynamic platform
TSC Alert
Navigating Housing Options for Dependent Adults (sponsored by Nobelpharma America)
In this episode of TSC Now host Dan Klein is joined by Bruce Hainan and Jim Kotsailidis from Nobelpharma America, LLC and Shelly Meitzler, TSC Alliance Director of Outreach and Support,
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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
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
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
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
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
Event
Adult Topic Call
We’re thrilled to announce that Jamie Capal, MD, Division Chief of Pediatric Neurology at the University of Rochester and Director of the newly established TSC Clinic, will be joining our Adult
Event
TS Canada ST Educational Series – Strategies for ASD and behavior in tuberous sclerosis complex
Tuberous Sclerosis Canada Sclérose Tubéreuse (TSC Canada ST) will continue hosting an educational series in 2025 to empower patients and their families with knowledge and resources related to tuberous sclerosis
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Caregiver Sleep Study
The University of Birmingham are conducting a study ‘Understanding Caregiver Experiences of Sleep Management Difficulties in Individuals with Tuberous Sclerosis Complex’. If you are a caregiver of a person with