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
JASPER Early intervention for Tuberous Sclerosis
Additional Funding Available to Support Travel to Participate in an Early Intervention Study for Infants and Toddlers. Researchers at UCLA and Boston Children’s Hospital are conducting a clinical trial of
TSC Matters Post
Researcher Seeking Donation of Tissue Samples from Your Surgery
Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular models of LAM and angiomyolipomas to catalyze translational research. Please contact us if you are considering lung transplantation
TSC Matters Post
Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures
Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate the effectiveness and safety of lacosamide (Vimpat®) in children less than 4 years of age who have partial-onset seizures.
TSC Matters Post
Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program
NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program provides patients diagnosed with tuberous sclerosis complex (or under consideration for diagnosis) with financial assistance for travel and lodging related
TSC Matters Post
Update on State Funding in Maryland and Missouri
The Missouri State Legislature appropriated $250,000 in the state’s 2020 budget for the TSC Center of Missouri. In addition, $500,000 for the new TSC Center of Maryland was appropriated in
TSC Matters Post
Upcoming Community Events
TSC Family Fun Day at Pullen Park Sunday, October 20, 2019 Pullen Park; Carousel Shelter 520 Ashe Ave Raleigh, NC 27606 Questions and RSVP: Karen Johnston at karen.m.whittington@gmail.com or (919) 451-1842 Southern California (Teen
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
Upcoming Adult Topic Calls
Are you an independent or semi-independent adult with TSC? If so, please join us for one of our upcoming free, one-hour informational calls: Thursday, October 24, 2019 “Open Forum” presented
TSC Matters Post
October Note from the President & CEO
On Thursday, October 3 the TSC Alliance celebrated our 45th Anniversary Gala at the Edison Ballroom in New York City. This magical evening brought together more than 500 people, including
TSC Alert
New Clinical Trial Finder Tool
The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.
TSC Alert
Come See Us at Upcoming Meetings and Conferences
The TSC Alliance will be exhibiting at several upcoming meetings this year: American Academy of Pediatrics National Conference and Exhibition in New Orleans, LA (Exhibit Dates: October 26-28, Booth Number: 546)
TSC Alert
New Clinical Trial Finder Tool
The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials.
TSC Alert
Come See Us at Upcoming Meetings and Conferences
The TSC Alliance will be exhibiting at several upcoming meetings this year: American Academy of Pediatrics National Conference and Exhibition in New Orleans, LA (Exhibit Dates: October 26-28, Booth Number: 546)
TSC Matters Post
Upcoming Adult Topic Calls
Are you an independent or semi-independent adult with TSC? If so, please join us for one of our upcoming free, one-hour informational calls: Thursday, September 26, 2019 “LAM and TSC”
TSC Matters Post
Upcoming Community Events
Northern California Picnic Saturday, August 25, 2019, 11 AM – 2 PM Contact: Lilian Ansari, (510) 388-6889 Family style picnic with main dish provided. Please sign up to bring a side/dessert.
TSC Matters Post
Become a Junior Leader!
We are looking for Junior Leaders for the 2019-2020 school year. The TSC Alliance offers this opportunity for young adults with TSC, or their siblings, to get involved with local
TSC Matters Post
45th Anniversary Flashback: The 1990s
Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary. This milestone is only possible due to the tenacity of untold numbers of tuberous sclerosis complex (TSC) community members,
TSC Matters Post
August Note from the President & CEO
From July 22-26 TSC Alliance staff members from across the country came together at our headquarters in Silver Spring, Maryland for our annual Staff Planning Meetings. These meetings are incredibly
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
Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program
What is the purpose of this program? NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program provides patients diagnosed with tuberous sclerosis complex (or under consideration for diagnosis) with
TSC Matters Post
JASPER Early intervention for Tuberous Sclerosis (Valid through September 2021) – Modified to Include Video-Based Intervention
Researchers from Boston and Los Angeles are studying the benefits of early behavioral intervention in infants and toddlers with TSC. Intervention is provided in person and now remotely via video
TSC Matters Post
Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT Trial)
Enrollment goal might be reached by Sept 2019
TSC Alert
TANDem Research Project Positions Available
The TANDem team is seeking two highly motivated and enthusiastic applicants to join their dynamic and international research consortium. Positions available in Belgium or South Arica include: PhD Student (four
TSC Alert
TANDem Research Project Positions Available
The TANDem team is seeking two highly motivated and enthusiastic applicants to join their dynamic and international research consortium. Positions available in Belgium or South Africa include: PhD Student (four
TSC Alert
Deadline Extended: DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Alert
2019 Dup15q Alliance Scientific Symposium
The 2019 Dup15q Alliance Science Symposium will be held July 17-18 at the Royal Sonesta in Houston Texas. Learn More
TSC Matters Post
Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program
What is the purpose of this program? NORD’s Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program provides patients diagnosed with tuberous sclerosis complex (or under consideration for diagnosis) with
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
Researcher Seeking Donation of Tissue Samples from Your Surgery
Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular models of LAM and angiomyolipomas to catalyze translational research. Please contact us if you are considering lung transplantation
TSC Matters Post
Efficacy and Safety of Lacosamide as Adjunctive Therapy in Subjects ≥1 Month to <4 Years with Partial-onset Seizures
Description: UCB Biosciences, Inc. is conducting a clinical trial to evaluate the effectiveness and safety of lacosamide (Vimpat®) in children less than 4 years of age who have partial-onset seizures.
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
45th Anniversary Flashback: The 1980s
Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary. This milestone is only possible due to the tenacity of untold numbers of tuberous sclerosis complex (TSC) community members,
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
Get Your Tickets Now to Our 45th Anniversary Celebration in NYC
On Thursday, October 3, 2019, the Tuberous Sclerosis Alliance (TS Alliance) will mark our sapphire anniversary, celebrating 45 Years of Changing the Future through Inspiration, Innovation and Hope,during an intimate 45th Anniversary Gala at the Edison Ballroom in New York City.
TSC Matters Post
Upcoming Community Events
Upper Midwest Picnic (Minneapolis, MN) Sunday, June 23, 2019, 11 AM Contact: Alanna Spotts, alannaspotts@gmail.com Join us for an afternoon of food, fun and friends! Main dish provided, sign up to bring
TSC Matters Post
June Note from the President & CEO
On May 15, the TSC Alliance joined TSC International (TSCi) to observe the seventh annual TSC Global Awareness Day, created to make sure that people worldwide were being diagnosed quickly
TSC Alert
Deadline Extended: DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Alert
The LAM Foundation Research Grants – 2019 Cycle
The LAM Foundation is accepting letters of intent for its grants program until June 15 at 11:59 p.m. US Central Time. Their mechanisms include a Pilot and Feasibility Grant, a Career Development Research
TSC Alert
The LAM Foundation Research Grants – 2019 Cycle
The LAM Foundation is accepting letters of intent for its grants program until June 15 at 11:59 p.m. US Central Time. Their mechanisms include a Pilot and Feasibility Grant, a Career Development Research
TSC Alert
Deadline Extended: DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Matters Post
International TAND Research Project Awarded Funding
Congratulations to Drs. Petrus de Vries (University of Cape Town) and Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) on being awarded funding from the Tuberous Sclerosis Association and the
TSC Alert
International TAND Research Project Awarded Funding
Congratulations to Drs. Petrus de Vries (University of Cape Town) and Anna Jansen (UZ Brussel – Vrije Universiteit Brussel) on being awarded funding from the Tuberous Sclerosis Association and the
TSC Alert
Grant LOIs Due April 8
We are now accepting letters of intent for Postdoctoral Fellowships and Research Grants. Learn more about our funding mechanisms and eligibility requirements on our Grants page. Letters of reference are required
TSC Alert
Deadline Extended: DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Matters Post
Bid Now in Our Exclusive Comedy for a Cure Silent Auction!
The TSC Alliance’s 18th Annual Comedy for a Cure happens this Sunday, April 7 in Hollywood. This year for the first time, we are thrilled to offer you the opportunity to
TSC Matters Post
2018 Volunteers of the Year
On Thursday, March 7, 2019 the TSC Alliance held its annual Volunteer Appreciation Dinner to honor our incredible volunteers across the country and celebrate 45 years of inspiration, innovation and hope.
TSC Matters Post
45th Anniversary Flashback: The 1970s
Throughout 2019, the TSC Alliance will celebrate our sapphire, 45th anniversary. This milestone is only possible due to the tenacity of untold numbers of tuberous sclerosis complex (TSC) community members,
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
Congratulations Dr. Martina Bebin!
Congratulations to Dr. Martina Bebin, former TSC Alliance Board Member and TSC Clinic Co-Director at The University of Alabama at Birmingham, for being recognized as a 2019 Yellowhammer Woman of
TSC Matters Post
IEP Season is Approaching
If you need support in understanding your rights as a parent/caregiver of a child with TSC, the TSC Alliance has an Education Parent Mentor Program.
TSC Matters Post
TAND Parent/Caregiver Survey: We Need Your Input!
As part of our TSC-Associated Neuropsychiatric Disorders (TAND) Initiative we’ve partnered with the Child Neurology Foundation to conduct a survey to understand caregivers’ experiences managing behavior in children with neurological
TSC Matters Post
Upcoming Adult Topic Calls
Are you an independent or semi-independent adult with TSC? If so, please join us for one of our upcoming free, one-hour informational calls:
TSC Matters Post
Comedy for a Cure 2019
On Sunday, April 7, 2019, the 18th Annual Comedy for a Cure® will be held at Academy LA in Hollywood.
TSC Matters Post
April Note from the President & CEO
We’re so excited to bring you the first issue of TSC Matters, our new bimonthly e-newsletter! TSC Matters is one of our new digital initiatives aimed at providing resources to
TSC Matters Post
Researcher Seeking Donation of Tissue Samples from Your Surgery (Valid through June 2020)
Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular models of LAM and angiomyolipomas to catalyze translational research. Please contact us if you are considering lung transplantation
TSC Matters Post
JASPER Early Intervention for Tuberous Sclerosis (Valid through September 2021) – Modified to Include Video-Based Intervention
Researchers from Boston and Los Angeles are studying the benefits of early behavioral intervention in infants and toddlers with TSC. Intervention is provided in person and now remotely via video
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E-Newsletter and Podcast Series
TSC Matters is a bimonthly community e-newsletter from the TSC Alliance highlighting TSC research updates, TSC clinical trials, upcoming TSC Alliance events and more. Click below to read and subscribe
TSC Alert
DoD Tuberous Sclerosis Complex Research Program Funding Opportunities Available
The Tuberous Sclerosis Complex Research Program (TSCRP) is now accepting Pre-Applications for the fiscal year 2019 grant cycle.
TSC Alert
DoD Tuberous Sclerosis Complex Research Program Preannouncement
The Tuberous Sclerosis Complex Research Program (TSCRP) will soon accept applications for the fiscal year 2019 grant cycle.
TSC Alert
Registration Now Open for 2019 International Tuberous Sclerosis Complex Research Conference
Register here 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
In Memoriam: Margaret Susan (Sue) Povey, 1942–2019
The TSC Alliance is deeply saddened by the passing of Sue Povey, whose work contributed to some of the largest discoveries in the genetics of TSC. Our heartfelt condolences go
TSC Alert
Research Conference Abstracts Due March 22
The 2019 International Tuberous Sclerosis Complex Research Conference: Changing the Course of TSC promises three days of exciting new science and networking! The organizing committee has reserved time for 13
TSC Alert
Grant LOIs Due April 8
We are now accepting letters of intent for Postdoctoral Fellowships and Research Grants. Learn more about our funding mechanisms and eligibility requirements on our Grants page. Letters of reference are
TSC Alert
Request Biosamples for Your Lab
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
CME Opportunity: 29th Annual Pediatric Neurology Update – April 11, 2019
Childen’s National Health System will be hosting the 29th Annual Pediatric Neurology Update in Rockville, MD on April 11, 2019. Neurosurgical advances in TSC and the transition to adulthood for
TSC Alert
Save These Dates for Our Toronto Research Conference
Please join us in June for our 2019 research conference, organized in partnership with Tuberous Sclerosis Canada Sclérose Tubéreuse and the TSC Alliance of Mexico. We hope to see you
TSC Alert
NCATS Funding Opportunities for Clinical Trial Readiness
The National Center for Advancing Translational Sciences announced two new funding opportunities focused on clinical trial readiness in rare diseases:
TSC Alert
Join Us at AES in New Orleans
Are you attending the American Epilepsy Society Annual Meeting in New Orleans November 30 to December 4? If so, please be sure to save the following dates:
TSC Alert
Grant Opportunity for TAND Research
In collaboration with the Fund Doctor & Mrs Charles Tournay-Dubuisson, the King Baudouin Foundation invites researchers worldwide to submit proposals related to TSC-Associated Neuropsychiatric Disorders (TAND). Up to €600,000 of
FAQ
View our 2018 team members
Team funds raised: $131,353.33 Wendy Anderson Running for Revi 1236596 anderson Justin Largent Team Arrow 1112874 largent Allen Newbauer 1231670 newbauer Kiran Thomas Running for Revi 1098387 thomas Bridget Faria
TSC Alert
The LAM Foundation Research Grants – 2018 Cycle
The LAM Foundation is accepting letters of intent for its grants program until June 15 at 11:59 p.m. US Central Time.
TSC Alert
2018 International Tuberous Sclerosis Complex Research Conference in Tokyo
The Japanese Society of Tuberous Sclerosis Complex (JSTSC) is organizing the 2018 International Tuberous Sclerosis Complex Research Conference. The meeting will be held September 13-15 at the JR Tokyo General
TSC Alert
Fibrous Cephalic Plaques—Beyond the Forehead
A new open access paper in the Journal of the American Academy of Dermatology investigates fibrous cephalic plaques (FCPs) in individuals with TSC. The authors found that though clinicians typically
TSC Alert
Funding Opportunities from NIAMS
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) announced two new funding opportunities that may be of interest to TSC researchers.
TSC Alert
Survey on mTOR Inhibitor Treatment Availability
Mathieu Lemaire, MSc, MDCM, PhD, FRCP(C), FAAP, and his research team at The Hospital for Sick Children in Toronto are conducting an international survey of physicians who treat individuals with
FAQ
View our 2019 team members
Team funds raised: $71,822.87 Jennifer Ballance Team Jay 1246142 Balance Suresh Thomas Running for Revi 1106397 Thomas Shalonda Alexander Alanas Army 1054381 Alexander Joseph Cervantez Team Vincent and TSC 1231680
TSC Alert
2017 Year in Review
2017 was a very productive year for advancing the science of tuberous sclerosis complex (TSC)! A very small sampling of our scientific community’s major accomplishments are highlighted below. The TSC
TSC Alert
Darcy Krueger, MD, PhD to Present SEGA and Epilepsy Webinar
Darcy A. Krueger, MD, PhD will present a CME/CPE/CNE-certified webinar entitled “Overcoming Treatment Challenges for Tuberous Sclerosis Complex (TSC): SEGA and the Future of Seizure Management” on January 25, 2018
TSC Alert
Voice of the Patient Report
The TSC Alliance has just submitted the Voice of the Patient report to the US Food and Drug Administration (FDA). This report summarizes the Patient-Focused Drug Development (PFDD) meeting that we
TSC Alert
Join us at AES in Washington, DC
Are you attending the American Epilepsy Society Annual Meeting in Washington, DC in December? If so, please be sure to save the following dates for our events throughout the week:
TSC Alert
Grant Opportunities in Dermatology
The American Skin Association and the Dermatology Foundation have issued calls for several grant opportunities relevant to researchers working on the skin manifestations of TSC. American Skin Association Research Scholar
TSC Alert
Updates from NINDS
TSC Alliance Chief Scientific Officer Steve Roberds, PhD, serves on the Advisory Council of the National Institute of Neurological Disorders and Stroke. During the open session of the Advisory Council
TSC Alert
Call for Applications: Autism Science Foundation Pre- and Postdoctoral Training Awards and Medical Student Gap Year Research Training Awards
The Autism Science Foundation (ASF) issued a call for applications for their Pre- and Postdoctoral Training Awards and Medical Student Gap Year Research Training Awards. The call is open to
TSC Alert
Join Our Mendeley Groups
Do you use Mendeley to organize your citations? We have created a Mendeley group for all research articles on tuberous sclerosis complex and a smaller group for articles supported by TSC
TSC Alert
2017 Research Grant Program Opens Monday
TSC Alliance’s 2017 Research Grant Program will begin accepting letters of intent on Monday, April 10. Please see our Grants and Funding page for application instructions and a list of this
TSC Alert
PREVeNT Trial Enrolling Participants
The Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT) trial, led by Martina Bebin at the University of Alabama Birmingham, is continuing to enroll participants at seven
FAQ
Annual Reports and Financials
2023 FY 2023 Annual Report FY 2023 Form 990 – Operating FY 2023 Form 990 – Endowment FY 2023 Consolidated Audit 2022 FY 2022 Annual Report FY 2022 Form 990
FAQ
Published Evaluations
Strategic Plan Progress Reports FY 2023 Strategic Plan Progress Report FY 2022 Strategic Plan Progress Report FY 2021 Strategic Plan Progress Report and Effectiveness Assessment FY 2020 Strategic Plan Progress
FAQ
Results Reporting
Theory of Change The TSC Alliance Theory of Change (TOC) resulted from a year-long series of critical thinking exercises by our board members and senior staff. In general, a TOC
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International
The TSC Alliance has a long-standing history of international involvement within the TSC community: supporting advocacy and research throughout the world with our Global Alliance Program and International Scientific Advisory
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Researchers
The TSC Alliance endeavors to stimulate, support and coordinate research that will lead to a cure for tuberous sclerosis complex (TSC), while improving the lives of those affected.