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Educational support
The TSC Alliance recognizes parents and young adults often face many educational and school-related difficulties. The first step in becoming an advocate is understanding your child’s legally protected rights. The
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Bcureful travel & lodging assistance
The Bcureful Travel Fund® at the TSC Alliance underwrites the TSC Travel and Lodging Patient Assistance Program, which is administered by the National Organization for Rare Disorders (NORD). This travel
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Find Support
Connect with TSC Alliance support navigators, our volunteer support network and TSC clinicians to help guide you along your unique journey. Click on a link below to learn more. FIND
FAQ
Working with your healthcare team
You do not need to have all the answers or become an expert in TSC to navigate you/your loved one’s care. You can empower yourself by clearly advocating your understanding
FAQ
Starting a new treatment plan
Navigating a new treatment plan can elicit mixed emotions – on one hand, starting a new plan may seem daunting, while on the other, a change can provide hope and
FAQ
Medical access issues
Living with a rare disease is difficult and there will be challenging barriers throughout the journey. Challenges are commonly centered around limited local resources, structural barriers to access care, insurance
FAQ
Choosing a healthcare provider
It is common for medical providers to be unfamiliar with TSC, including neurologists, pediatricians and primary care providers (PCPs). It is crucial to have a local healthcare team involved in
FAQ
Psychosocial cluster recommendations
Monitor the psychosocial health and wellbeing of all individuals with TSC. Monitor the psychosocial functioning of all family members who live with TSC. Provide integrated and well-coordinated care to families
FAQ
TAND clusters and recommendations
While TSC impacts everyone differently, research analyzing TAND Checklist data identified seven natural clusters of TAND manifestations, as well as a wraparound psychosocial cluster. As stated above in the core
FAQ
The TAND Checklist
The TAND Checklist was developed to help clinical teams, individuals with TSC and their families screen for TAND and prioritize what to do next. Experts at the 2012 TSC Clinical
FAQ
Core principles for the identification and treatment of TAND
Everyone with TSC is at risk of TAND. Therefore, everyone with TSC needs lifelong monitoring for the emergence of TAND. Screen for TAND at least annually and follow up with
FAQ
The TAND Consortium and TANDem Project
The TAND Consortium is an international group of TSC experts including researchers, clinicians and TSC family representatives. TANDem is an international multi-disciplinary mobile-health project to empower families and individuals who
FAQ
Scholastic cluster recommendations
Scholastic difficulties are common in TSC and should receive early and ongoing screening, followed by appropriate action. Delays in language development, counting, social/communication skills, and other developmental milestones may be
FAQ
Overactive/Impulsive cluster recommendations
Overactive and impulsive behaviors are common in TSC and should be monitored in all individuals to ensure early detection and treatment All individuals with overactive and impulsive behaviors should be
FAQ
Neuropsychological cluster recommendations
Everyone with TSC should receive a comprehensive assessment of their intellectual ability at the time of diagnosis to identify their profile of strengths and weaknesses. Children and adults with TSC
FAQ
Mood/anxiety cluster recommendations
Mood and anxiety symptoms should be monitored in all children and adults with TSC to ensure early detection and treatment when necessary. Efforts should be made to look for mood
FAQ
Eat/sleep cluster recommendations
Eating difficulties do occur in TSC and could be related to a range of TAND and physical health issues. Therefore, eating difficulties should be monitored on a regular basis. As
FAQ
Dysregulated behavior cluster recommendations
Dysregulated behaviors are common in TSC, have a major impact on the family and require a systematic approach. It is important to understand the meaning/function of dysregulated behaviors to guide
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Dysregulated behaviors
Dysregulated behaviors, including aggression, temper tantrums, and self-injury, represent the greatest concerns and burdens to families who live with TSC. These behaviors are therefore a common reason for referral to
FAQ
Autism-like cluster recommendations
Everyone with TSC should be monitored for symptoms in the autism-like cluster from early in infancy and throughout adulthood. Anyone who shows behaviors within the autism-like cluster should be referred
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Types of pharmacies
In addition to your primary care physician and team of specialists, your local pharmacist and insurance case manager are important members of your healthcare team. Being proactive in establishing these
FAQ
Overcoming hurdles
Webinar In January 2021, the TSC Alliance hosted an educational webinar with Greenwich Biosciences titled “Overcoming Hurdles: Insurance, Scripts and Specialty Pharmacy.” You may watch it below or at this
FAQ
Assistance programs
Many medications have co-pay assistance programs for those who qualify. Generally, co-pay assistance is for commercial insurance plans. However, drug manufacturers may also have patient assistance programs (PAPs) for those
FAQ
Tips to mitigate issues
Medication denials by insurers are an unfortunate reality that can occur. It is helpful to understand why many denials are made and what can be done to prevent them. Usually,
FAQ
Prior authorization issues
Medications prescribed for TSC-related manifestations often require a prior authorization (PA). It is important to know what medications will require this, and how long the PA is approved for each
FAQ
Pharmacy coverage
Prescription drug plans are part of all commercial and government insurance plans in the United States; however, each plan is different per corporation / organization and state. When starting to
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Medication access issues
Many people with tuberous sclerosis complex (TSC) rely on several medications to treat different manifestations of the disease. Disruptions to medication can have negative impacts on an individual with TSC
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Pharmacy Resources
Medication Access Issues Medication Resources Types of Pharmacies
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Self-care & Mental Health
Being diagnosed with tuberous sclerosis complex (TSC) can cause significant challenges within the life of the individual regardless of when first diagnosed. It is essential to understand acknowledging that life
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Grief & Bereavement
All caregivers should prepare for the possibility of grief or bereavement during the care of a loved one. Caregivers naturally become deeply emotionally invested in the individuals for whom they
FAQ
The aging caregiver
Growing old is an inevitable part of life, but it can be especially daunting for those who care for individuals with a rare disease and/or intellectual disabilities. Life as a
FAQ
Transition planning
Regardless of their disabilities, all children eventually become adults – both physically and legally. Transition planning is an intentional and coordinated process used to help students with disabilities transition from
FAQ
Skin, eyes & teeth manifestations
Most of these manifestations do not cause life-altering problems. However, facial angiofibromas do continue to grow throughout this part of the lifespan and can become painful and cause recurrent bleeding
FAQ
Heart manifestations
Typically during adulthood the common pediatric manifestation of cardiac rhabdomyomas has completely regressed. However, some individuals with TSC will continue to have small evidence of these lesions throughout adulthood. There
FAQ
Lung manifestations
Individuals with TSC are at a higher risk of developing lymphangioleiomyomatosis (LAM). LAM is a rare lung disease that affects women more often than men, usually between the onset of
FAQ
End-stage renal disease
End-stage renal disease (ESRD) is when your kidneys permanently stop working and require long-term dialysis or a kidney transplant to maintain life. While ESRD is rare in TSC, chronic kidney
FAQ
Kidney manifestations
Kidney (renal) manifestations such as cystic disease and renal angiomyolipomas continue to grow throughout this part of the lifespan. Not only are you/your loved one aging, in which chronic kidney
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Transition & Adult Years
As people with tuberous sclerosis complex (TSC) age and transition from pediatrics to adult care, certain manifestations which may or may not have been problematic during childhood or adolescence now
FAQ
Heart manifestations
The common pediatric manifestation of cardiac rhabdomyomas is known to regress over time from birth. However, some individuals with TSC will continue to have small evidence of these lesions throughout
FAQ
Lung manifestations
Individuals with TSC are at a higher risk of developing lymphangioleiomyomatosis (LAM). LAM is a rare lung disease that affects women more often than men, usually between the onset of
FAQ
Kidney manifestations
Kidney (renal) manifestations such as cystic disease and renal angiomyolipomas continue to grow throughout this part of the lifespan. Not only is your loved one aging, in which chronic kidney
FAQ
Neurological manifestations
During infancy through young adulthood seizures and subependymal giant cell astrocytoma (SEGA) dominate much of the medical journey. Seizures are still problematic for many and unfortunately several have developed refractory
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Early & Childhood Years
It is common for medical providers to be unfamiliar with tuberous sclerosis complex (TSC), including neurologists and pediatricians. It is crucial to have a local neurologist and pediatrician involved in
Resource
Episode 49: Community Spotlight – Gloria Triebenbach
In a final bonus episode in 2023, host Dan Klein connects with Gloria Triebenbach, Chair of the TSC Alliance of the Pacific Northwest and Step Forward to Cure TSC Walk
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SUDEP Awareness
SUDEP stands for sudden unexpected death in epilepsy. It is a rare but fatal complication of epilepsy with no other known cause of death. While the exact cause of SUDEP
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Residential & Group Homes
During the transition phase and estate planning, families ought to consider housing options that would best serve the needs of their loved one with tuberous sclerosis complex (TSC). As these
FAQ
Guardianships
A guardianship – or conservatorship depending on the state – is a legal action that grants an adult legal power to make decisions for another person. Guardianship is a legal
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Estate & Financial Planning
What is estate and financial planning? This topic can seem overwhelming with the breadth of information available on the topic. This guide will help you get familiar with the process
Resource
Episode 48: Community Spotlight – Kristen Moore
In a bonus episode, host Dan Klein connects with Kristen Moore, Vice Chair of the TSC Alliance of the Carolinas and Step Forward to Cure TSC Walk Chair for the
Resource
Episode 47: Closing the Epilepsy Treatment Gap Worldwide
In this episode, host Dan Klein learns about Pretola Global Health and Consulting Limited and how they advocate for a better future for people living with epilepsy, learning disability and
FAQ
Tips from adults
Along your journey, it is helpful to know you are not alone. Despite this being a very difficult time, the TSC community has compiled helpful resources to guide you during
FAQ
Where do I go?
It is common for medical providers to be unfamiliar with TSC, including neurologists, and primary care providers (PCPs). It is crucial to have local healthcare team involvement in your care
FAQ
What are my options?
Treatment options directly depend on the manifestation or the organ system that is causing an issue. Adulthood diagnosis of TSC typically presents much differently than childhood, therefore treatment management is
FAQ
Where do I start?
In adulthood this can be by an incidental finding (meaning it was found by looking for something else) or an abrupt finding (such as a renal hemorrhage) which can be
FAQ
Tips from parents
Along your journey, it is helpful to know you are not alone. Despite this being a very difficult time, the TSC community has compiled helpful resources to guide you during
FAQ
Where do I go?
It is common for medical providers to be unfamiliar with TSC, including neurologists, and pediatricians. It is crucial to have a local neurologist and pediatrician involved in your child’s healthcare
FAQ
What are my options?
Treatment options directly depend on the manifestation, such as the type of seizure or the organ system that is causing an issue. If your child presented with seizures, the most
FAQ
Where do I start?
Often, a TSC diagnosis can be sudden which can be even more overwhelming to process – there can be an immense amount of testing and specialist visits to coordinate all
FAQ
Tips from parents
Along your journey, it is helpful to know you are not alone. Despite this being a very difficult time, the TSC community has compiled helpful resources to guide you during
FAQ
In utero diagnosis
The most common manifestation in utero are irregular growths in heart tissue, known as cardiac rhabdomyoma. These are benign (non-cancerous) and usually get smaller on their own as the child ages. Rhabdomyomas
FAQ
Prenatal screening
Prenatal genetic testing is a common method many women seek to learn whether their baby has certain genetic disorders. There are two types of prenatal tests, prenatal screening tests and
FAQ
Evaluation of new-onset seizures in adults
All individuals with new-onset seizures should request a referral to a neurologist, preferably one who is an epileptologist with knowledge of TSC. This neurologist will perform a complete neurological exam,
FAQ
When should rescue medications be used for seizure clusters or status epilepticus?
Every person with TSC and epilepsy should develop a Seizure Action Plan with his or her medical provider that details the indications for use of a seizure rescue medication and
FAQ
What is status epilepticus?
The official definition of status epilepticus has evolved over time, but the term generally refers to a prolonged seizure that may not stop on its own without intervention. The most recent definition
FAQ
What is a seizure cluster?
The definition of a seizure cluster varies from one individual to another, but in general the term refers to a group of seizures occurring over a number of hours or days in
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Seizure clusters & status epilepticus
Epilepsy is a very common manifestation of tuberous sclerosis complex (TSC), occurring in 84% of patients registered in the TSC Alliance Natural History Database. Potential complications of epilepsy include seizure
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Epilepsy treatment options
Epilepsy is a common manifestation of tuberous sclerosis complex (TSC). More than 80% of individuals with TSC will have seizures at some point during the journey, most often beginning in
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Infantile spasms
Infantile spasms or epileptic spasms are severe seizure disorders that may affect infants with tuberous sclerosis complex (TSC). About 30% of children with TSC may start experiencing these seizures. The
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Brain abnormalities
Several types of brain abnormalities may be seen in individuals with tuberous sclerosis complex (TSC), including cortical tubers, subependymal nodules (SEN), and subependymal giant cell astrocytoma (SEGA). Some individuals will
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Working with Your Healthcare Team
You do not need to have all the answers or become an expert in TSC to navigate you/your loved one’s care. You can empower yourself by clearly advocating your understanding
Page
Starting a New Treatment Plan
Navigating a new treatment plan can elicit mixed emotions – on one hand, starting a new plan may seem daunting, while on the other, a change can provide hope and
Page
Medical Access Issues
Living with a rare disease is difficult and there will be challenging barriers throughout the journey. Challenges are commonly centered around limited local resources, structural barriers to access care, insurance
Page
Choosing a Healthcare Provider
It is common for medical providers to be unfamiliar with TSC, including neurologists, pediatricians and primary care providers (PCPs). It is crucial to have a local healthcare team involved in
Page
Bones
Sclerotic bone lesions are commonly observed in individuals with tuberous sclerosis complex (TSC) when high-resolution chest computed tomography (CT) is performed as surveillance for possible lymphangioleiomyomatosis (LAM) or abdominal magnetic
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Other organs
Cysts and angiomyolipomas similar to those found in the kidneys have been observed in other organs, such as the adrenal gland, liver, lung, ovary and pancreas. These lesions are usually
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Teeth
Oral involvement in TSC can include gum fibromas and dental pits. The fibromas appear as overgrowth of the gums and can be quite extensive, although this finding is not common
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Heart
Tumors in the heart called rhabdomyomas are common in infants with tuberous sclerosis complex (TSC), affecting an estimated 47-67% of infants with TSC. Rhabdomyomas can affect cardiac function in some
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Lungs
Lung involvement is more common in women with TSC than men. The average age of onset is during the childbearing years, although lung involvement can occasionally occur in teenagers with
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Skin
Most people with tuberous sclerosis complex (TSC) have changes in their skin. Nearly all people with TSC develop at least one skin feature during their lifetime, and many will have
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Kidneys
Most individuals (greater than 80%) with tuberous sclerosis complex (TSC) will develop some form of renal (kidney) disease during their lifetime. There are three renal disorders in TSC: renal cysts,
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Eyes
Nearly 50% of individuals with TSC have involvement of one or both eyes, but visual loss is uncommon. This may be higher as many individuals with TSC do not receive
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Epilepsy/seizure disorders
One of the most common neurological features of tuberous sclerosis complex (TSC) are seizures. This feature occurs in 84% of individuals with TSC. In some cases, seizures can start as
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Brain & neurological function
Multiple manifestations can occur in the brain of someone with TSC. Click on an item listed below to learn more: Brain abnormalities Epilepsy/seizure disorders In addition to these physical challenges,
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Surveillance & treatment
The following table provides guidelines to help you and your loved one manage the treatment of TSC. Additional information for your physician is available here. Surveillance & management recommendations for TSC
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Diagnostic criteria
In 2021, the International Tuberous Sclerosis Complex Consensus Group reviewed prevalence and specificity of TSC-associated clinical manifestations and updated the TSC diagnostic criteria published in 2013. Clinical features of TSC
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Prognosis
Most people with TSC will live a normal life span. Although there is no cure, there is hope. Research has proven that early diagnosis and intervention(s) are key for optimizing
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Clinical Manifestations
Because TSC affects no two people the same, there is no sure way to predict where and how the disorder will manifest. To better understand its potential impact, click below
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Genetics
TSC affects multiple organs throughout the lifetime. Both the TSC1 and TSC2 genes hold the instructions for creating proteins called hamartin and tuberin, respectively. These proteins form a complex (essentially
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Stories of hope
While no one’s experience with tuberous sclerosis complex (TSC) is exactly the same, there are common threads the TSC community shares: overcoming adversity, finding joy in moments small and large,
Story of Hope
Megan Elizabeth Self
I was diagnosed with TSC at birth and although I have a mild case of TSC, I have endured many challenges. I have a Bachelor of Science in Health Sciences
Story of Hope
Shae Sunahara
Shae was diagnosed with TSC when she was 3 months old. Over the years, she’s taken special education classes, including life skills courses focusing on transitioning into adulthood. She also
Story of Hope
Amaan Panjwani
Amaan was diagnosed with TSC when he was 5 months old. He’s currently a Junior at Creekview High School. He likes to take one day at a time and “always
Story of Hope
Keira Luke
When Keira was born with TSC, the meaning of life for her mother, Sunny, was forever changed. Sunny is blind due to retinitis pigmentosa. Sunny had to learn how to
Story of Hope
Terrence Hamilton, Jr.
Terrence was diagnosed with TSC when he was 3 days old. He is home schooled and is in the 10th grade, living at home with his parents. He is passionate about
Story of Hope
Max Lucca Bertolotti
Diagnosed with TSC at two weeks old, Max is currently in the 8th grade. He has TSC1 and was born with multiple tubers in his brain, a SEGA brain tumor,
Story of Hope
Chloe Carpenter
Chloe was found to have an irregular heartbeat at 12 hours old, with an MRI confirming her TSC diagnosis at 36 hours. She is currently a very happy and engaged
Story of Hope
Emmaus Ballew
Emmaus was diagnosed with TSC at birth, while several cardiac rhabdomyomas were found at 34 weeks gestation. Emmaus has epilepsy and autism and is currently a fourth grader with an
Story of Hope
Arij Chattopadhyay
Diagnosed at 10 days before birth, Arij started second grade recently. His first few years were hard and overwhelming for him and his family, although they know all families have
Story of Hope
Noah Johnson
Noah was diagnosed with TSC at birth. His parents say, “Noah has hope, because so many individuals, whom we may never know their names and get to thank personally, have
Story of Hope
Seraphina Holmes
Seraphina was diagnosed in utero and is currently in pre-school. Seraphina’s mom Lesley says, “Never give up hope. Seraphina’s diagnosis has taught our family to take nothing for granted and to
Story of Hope
Jovee Shae Dreier
TSC was suspected at 23 weeks in utero due to cardiac rhabdomyomas identified during a routine ultrasound. Her diagnosis of TSC2 was confirmed through genetic testing of her cord blood,
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Caregiver resources
Embarking on the caregiver journey for individuals with tuberous sclerosis complex (TSC) involves thoughtful consideration and planning. The sections below provide valuable insights into key aspects that caregivers often navigate.
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Coordination of care
Navigating tuberous sclerosis complex (TSC) involves adopting a strategic healthcare approach. As medical providers often lack familiarity with TSC, it’s crucial to form a local healthcare team to serve as
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Surveillance & management
Managing tuberous sclerosis complex (TSC) across the lifespan requires attentive surveillance and effective strategies. Delve into the challenges and considerations present in both the early and childhood years, as well
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Mental health
Caregivers and individuals with tuberous sclerosis complex (TSC) often meet challenges, and mental health plays a crucial role in navigating these complexities. This section explores valuable insights and resources for
Resource
Episode 46: Understanding drug resistant epilepsy and treatment options
In this episode of TSC Now, host Dan Klein interviews Karen Keough, MD, a child neurologist at Child Neurology Consultants of Austin. Dr. Keough defines drug resistant epilepsy (DRE), explains
TSC Matters Post
Ongoing Sleep Studies
See below for ongoing trials.
TSC Matters Post
Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?
Do you or your loved one suffer from epileptic seizures? Noema Pharma is developing basimglurant, a drug with a new mechanism of action and a potential for treatment of seizures associated with
Testimonial
Donato Family
“A blood draw is such an easy thing for my daughter to do. To have it done at home makes it super convenient.”
News Item
New publication on International consensus recommendations for TAND
International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) from researchers from the TANDem project were recently published in the Journal of Neurodevelopmental Disorders.
News Item
Sabril Supply Issue Recommendations
The TSC Alliance® is aware of the current supply issue with Sabril Oral Solution, 500 mg packets; it does NOT affect Sabril tablets 500mg. Lundbeck estimates this issue will be
FAQ
Corporate Relations Policy
The TSC Alliance will enter into corporate relationships for the sole purpose of providing mission related benefits to its members and the TSC community. The TSC Alliance will not accept
FAQ
Financial Conflict of Interest Policy
The Public Health Service (PHS) has adopted regulations (42 CFR Part 50 Subpart F and 45 CFR Part 94) to provide a reasonable expectation that the design, conduct, and reporting
TSC Alert
Join Our Peer-to-Peer Listserv for Healthcare Professionals
The TSC Alliance invites healthcare professionals affiliated with a TSC Clinic, TSC Center of Excellence, or University Medical Center to subscribe to our private listserv: p2p@lists.tscalliance.org.
TSC Alert
Advanced Research Projects Agency for Health (ARPA-H) Funding Announcement
The mission of ARPA-H is to accelerate better health outcomes for everyone by supporting the development of high-impact solutions to society’s most challenging health problems. Awardees will develop groundbreaking new
Team Member
Sam Metzger
Sam joined the TSC Alliance in July 2023 as a Scientific Project Manager. While attending George Washington University, from which she graduated with a Bachelors of Science in Biology, she
Team Member
Elizabeth Skufca
Elizabeth joined the TSC Alliance in June 2023 as Community Programs Manager. She brings a wealth of experience working with young people and families from her career as a middle
TSC Matters Post
April 2023 Message from the CEO
TSC Alliance President & CEO Kari Luther Rosbeck announces registration opening for the 2023 Regional TSC & LAM Conference Series co-hosted with The LAM Foundation, encourages everyone to participate in
TSC Matters Post
Basimglurant, a new mechanism of action for control of seizures in tuberous sclerosis complex?
Do you or your loved one suffer from epileptic seizures? Noema Pharma is developing basimglurant, a drug with a new mechanism of action and a potential for treatment of seizures
TSC Matters Post
Congratulations to our Volunteers of the Year
Earlier this year, as part of our Volunteer Leadership Summit, the TSC Alliance recognized several volunteers for their outstanding dedication and commitment to our organization and for tireless efforts supporting TSC individuals
TSC Matters Post
Current Clinical Trials
See below for ongoing clinical trials. For a full list of clinical trials go to the Clinical Trial Finder to find a trial that may best suit your needs.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Tuberous Sclerosis Complex Travel and Lodging Patient Assistance Program
Bcureful’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
Anya’s Accelerator TAND Biomarker Workshop
With support from the The Ramesh and Kalpana Bhatia Family Foundation, the TSC Alliance hosted the first Anya’s Accelerator TAND Biomarker Workshop April 26-27, 2023 in Silver Spring, MD.
TSC Matters Post
Watch our recent webinar on SUDEP
TSC Matters Post
Join us for an upcoming Adult Topic Call
Are you an independent or semi-independent adult with TSC? If so, please join us for our upcoming free Topic Call!
Resource
Episode 44: Rare Conversations
Disclaimer: This episode is sponsored by Nobelpharma America LLC. The opinions expressed are those of the host and guest speaker individually and do not reflect the policies or positions of
TSC Alert
Tuberous Sclerosis Complex Research Program Funding Opportunities for Fiscal Year 2023
The FY23 Defense Appropriations Act is anticipated to provide funding for the TSCRP to support innovative, high-impact tuberous sclerosis complex (TSC) research. The managing agent for the anticipated funding opportunities
TSC Alert
Advanced Research Projects Agency for Health (ARPA-H) Funding Announcement
The mission of ARPA-H is to accelerate better health outcomes for everyone by supporting the development of high-impact solutions to society’s most challenging health problems. Awardees will develop groundbreaking new
TSC Alert
Early-Stage Investigator Research Grants & Postdoctoral Fellowships
The TSC Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. We invest in early-career researchers to drive innovative TSC
Testimonial
Ridler Family
“We want to see a cure in our lifetime and have to say things are so much better than 30 years ago because of the efforts of researchers and the TSC Alliance.”
TSC Matters Post
We Need Your Input!
In 2023, the TSC Alliance will update our five-year strategic plan, so we are launching a comprehensive online Constituent Survey to assess what the organization is doing right, identify those
Resource
Episode 42: Understanding Seizure Clusters
In the first episode of TSC Now in 2023, host Dan Klein recognizes International Epilepsy Day (February 13, 2023) and Seizure Action Plan Awareness Week (February 13-20, 2023) by learning
FAQ
View our 2022 team members
Team funds raised: $27,172 Chip Burkhalter Team Bear Goal: $5,000 Amount Raised: $8,589 Thomas Peter Crino Goal: $5,000 Amount Raised: $5,923 Thomas Jenny Kuehn Team TSC Runs! Goal: $5,000 Amount
FAQ
View our 2021 Team Members
Team funds raised: $47,654 Claire Blyth Running for Revi Goal: $5,000 Amount Raised: $6,689 1246142 Balance Chip Burkhalter Team Bear Goal: $5,000 Amount Raised: $6,482 Thomas Kristin Burkhalter Team Bear
TSC Alert
Developmental Synaptopathies Consortium Request For Pilot Project Applications
Overview: The pilot feasibility core of the Developmental Synaptopathies Consortium (DSC) is pleased to announce that it will fund an estimated $40,000 total costs for a pilot project to stimulate additional
Team Member
Maddison Larrimore
Maddison joined the TSC Alliance in January 2023 as Social Media & Content Coordinator. She brings four years of content creation and social media experience contributing to her role with
TSC Matters Post
Ongoing Epilepsy Trial
See below for the upcoming trial.
Resource
Episode 41: Help Today, Help Tomorrow
In the final episode of TSC Now in 2022, host Dan Klein connects with two incredible advocates for individuals with disabilities and learns how families can find support to help
Team Member
Liz Cassidy, MPH
Liz joined the TSC Alliance in October 2022. She has previous clinical research experience, including undergraduate research experience at The Catholic University of America, where she graduated in 2018. As an undergrad,
Resource
Episode 40: Totally Super Cool!
In a special bonus episode of TSC Now, host Dan Klein learns about a new children’s book called Totally Super Cool, which was developed by Nobelpharma America, LLC. This Podcast
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En Español
Bienvenido a la página de la TSC Alliance; la alianza que sirve como una fuente de esperanza y apoyo para las personas con el complejo de esclerosis tuberosa (CET) y
Testimonial
Anna B. Rose – San Juan, Puerto Rico
Anna nació con unas manchitas blancas en la piel. A los cinco meses comenzó a tener Espasmos Infantiles.
Resource
Episode 37: The MILED Trial and the Future of LAM Research
In this episode of TSC Now, host Dan Klein celebrates Worldwide LAM Awareness Month (#WWLAM) and raises awareness of lymphanhgioleiomyomatosis (LAM) and a pivotal clinical trial in LAM that is
Testimonial
Leonard/Grabb Family
“Our family chose to participate in this initiative because we have seen the progress made over our son’s lifetime due to research advances.”
Testimonial
Gomes Family
“I chose to participate in the Biosample Repository because I was asked by caring people in similar situations and it is the right thing to do for her.”
TSC Matters Post
Message from the CEO – April 2022
TSC Alliance® President and CEO Kari Luther Rosbeck, along with Director of Community Education & Resources Shelly Meitzler, Vice President of Community Programs April Cooper, and World TSC Conference Chair
Team Member
Carly Kaye
Carly joined the TSC Alliance as Community Programs Manager in April 2022 after serving as a volunteer including Chair, TSC Alliance of Michigan, and Clinic Ambassador at the TSC Clinic
TSC Alert
TANDem Seed Grant Funding Available from UK Tuberous Sclerosis Association
This year, together with the TAND consortium, The Tuberous Sclerosis Association in the UK is running their first ever TAND-centered funding round. The remit of this call is to offer
TSC Alert
LAST CALL: Early-Stage Investigator Research Grants & Postdoctoral Fellowships
2022 Grant LOIs Due April 18! Log in to Proposal Central and search for the TSC Alliance 2022 Research Grant and Postdoctoral Fellowship program now.
Resource
Episode 34: Celebrating 20 Years of Comedy for a Cure
In this episode of TSC Now, host Dan Klein recognizes the 20th Anniversary Comedy for a Cure® on Sunday, April 3 at the Avalon in Hollywood, California! To kick off the
Team Member
Rachel Wojnilower
Rachel joined the TSC Alliance in March 2022 and currently serves as the TSC Alliance’s Chief of Staff. In her role, she serves as a liaison between the President and
Team Member
Ryan Beebe
Ryan joined the TSC Alliance in March 2022 as Manager, Annual Giving & Partnerships. In this role, Ryan assists in the overall strategic planning and managing of the organization’s strategic
Testimonial
Meitzler Family
“It’s super easy and convenient right in our house.”
Testimonial
Brtan Family
“We highly recommend any parent or TSC adult to participate in the process to seek cure of TSC.”
Testimonial
Sunahara Family
“By participating in the Tuberous Sclerosis Complex Research and the Biosample Repository Program, we know we will bring new hope for patients afflicted, no matter how immediate.”
Testimonial
Parkes Family
“We are so grateful for the many advances in TSC Research and for the patients and parents who have offered data and samples, contributing to this great progress.”
TSC Alert
DSC Funding Opportunity – DEADLINE APRIL 15!
The Pilot Feasibility Core of the Developmental Synaptopathies Consortium (DSC) is pleased to announce it will fund an estimated $30,000 total costs per project (three in total) to stimulate additional research
TSC Alert
Early-Stage Investigator Research Grants & Postdoctoral Fellowships
2022 Grant Cycle Starts Now! Log in to Proposal Central and search for the TSC Alliance 2022 Research Grant and Postdoctoral Fellowship program now. The TSC Alliance is dedicated to finding
Testimonial
Russell Family
“The TSC Alliance’s mobile phlebotomy initiative made it easy for our daughter to participate safely and in the comfort of our own home.”
Team Member
Cynthia Arcuri, CPA
Cynthia joined the TSC Alliance team in January 2022 and previously served as Director of Finance & Administration at a public accounting firm in Pittsburgh, PA, overseeing all firm operations,
Team Member
Anne Wolfe
Anne joined the staff in 2021 as Senior Community Programs Manager and was promoted to Senior Manager of Strategic Projects in January 2023. In this role, she oversees a portfolio
Team Member
Christen Bell
Christen joined the TSC Alliance as a grant writer consultant in July 2021. She has three years of freelance writing experience, including research and a variety of content creation and
Resource
Episode 30: Infantile Spasms Awareness Week 2021
In Episode 30 of TSC Now, host Dan Klein kicks of Infantile Spams Awareness Week 2021, an initiative from the Infantile Spasms Action Network (ISAN) that runs December 1-7. ISAN
TSC Matters Post
Thank You Future Leaders Class of 2020-2021
The six young adults in the Future Leaders Class of 2020-2021 greatly exceeded the requirements of the program and have been instrumental in moving it forward. Too often young adults
Resource
Episode 28: Comedy for a Cure® 2021!
In a very special episode of TSC Now, host Dan Klein provides a sneak peek of the 19.5 Annual Comedy for a Cure® on Sunday October 17 at 7:30 pm
Resource
Episode 27: Going Back to School and Caring for the Caregiver
In Episode 27 of TSC Now, host Dan Klein learns how parents can prepare for the start of a new school year despite the ongoing pandemic. Dan also talks to a
TSC Matters Post
Ongoing Genetic Study
See below for the ongoing study.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trial
See below for the ongoing trial.
TSC Matters Post
August Volunteer Opportunities
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
Resource
Episode 25: Lymphangioleiomyomatosis & Worldwide LAM Awareness Month (#WWLAM)
In Episode 25 of TSC Now, host Dan Klein recognizes Worldwide LAM Awareness Month (#WWLAM) by focusing on lymphangioleiomyomatosis (LAM), a rare lung disease affecting women that is characterized by
TSC Matters Post
Ongoing Genetic Study
See below for the ongoing study.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trial
See below for the ongoing trial.
TSC Matters Post
June Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Alert
New Free CME Opportunity Available
Hear leading experts in tuberous sclerosis complex (TSC) discuss recent updates to consensus recommendations and offer practical guidance for the diagnosis, surveillance, and management of TSC in a new CME-certified
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 2021 grant cycle.
TSC Alert
International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future
June 17-19, 2021 | Royal College of Physicians | Virtual The International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future will take place virtually across three days. The conference will explore how
Resource
Episode 24: Achieving Universal Health Coverage and Driving Innovative Research Through Global Collaboration
It’s the two-year anniversary of TSC Now and we’re celebrating with a new name, the TSC Alliance! If you missed our announcement on May 16, the Tuberous Sclerosis Alliance has
TSC Alert
New Free CME Opportunity Available
Hear leading experts in tuberous sclerosis complex (TSC) discuss recent updates to consensus recommendations and offer practical guidance for the diagnosis, surveillance, and management of TSC in a new CME-certified
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 2021 grant cycle.
TSC Alert
International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future
June 17-19, 2021 | Royal College of Physicians | Virtual The International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future will take place virtually across three days.
TSC Alert
What’s With the New Look?
On Sunday May 16, the Tuberous Sclerosis Alliance formally unveiled a new brand and new name: TSC Alliance. We also introduced a new tagline, “Hope no matter how complex.”
TSC Matters Post
Ongoing Genetic Study
See below for the ongoing study.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trial
See below for the ongoing trial.
TSC Matters Post
Ongoing Epilepsy Trial
See below for the upcoming trial.
TSC Matters Post
April 2021 Note from the President & CEO
TSC Alliance President and CEO Kari Luther Rosbeck provides organizational updates, including: How you can get involved in the upcoming Step Forward to Cure TSC Global Virtual Walk-Run-Ride. Information on
TSC Matters Post
Congratulations to Our 2020 Volunteers of the Year!
On Friday, March 5 the TSC Alliance hosted our annual Volunteer Appreciating Celebration to pay tribute to the outstanding work of our incredible volunteers, who continue to work diligently around
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 Alert
International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future
June 17-19, 2021 | Royal College of Physicians | Virtual The International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future will take place virtually across three days.
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 2021 grant cycle.
Resource
Episode 22: Overcoming Hurdles with Health Plans and Specialty Pharmacies
In Episode 22 of TSC Now, host Dan Klein explores overcoming hurdles in healthcare, specifically to help parents/caregivers and individuals with tuberous sclerosis complex (TSC) navigate issues with access to
TSC Alert
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
International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future
June 17-19, 2021 | Royal College of Physicians | Virtual The International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future will take place virtually across three days.
TSC Alert
Last Call: Young Investigator Fellowship Opportunity with the DSC
This fellowship opportunity is open to MD, PhD, or MD/PhD applicants. Areas of potential research include but are not limited to: iPSC derived neuronal modelling of TSC, characterization of the
TSC Matters Post
Ongoing Genetic Study
See below for the ongoing study.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trial
See below for the ongoing trial.
TSC Matters Post
Ongoing Epilepsy Trial
See below for the upcoming trial.
TSC Matters Post
February Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Curing the Epilepsies Conference Summary
The National Institute of Neurological Disorders and Stroke (NINDS) has sponsored a Curing the Epilepsies conference every seven years in 2000, 2007, and 2013. A major outcome of these conferences
TSC Matters Post
February Note from the CEO
TSC Matters Post
In Memory Of Ken Johnson
The TSC Alliance and Endowment Fund Board of Directors recently established the Ken Johnson Memorial Fund to honor and pay tribute to Ken Johnson – a grandparent, organizational leader, compassionate volunteer
TSC Alert
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
International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future
June 17-19, 2021 | Royal College of Physicians | Virtual The International Tuberous Sclerosis Complex Research Conference 2021: A Vision for the Future will take place virtually across three days.
TSC Alert
New Young Investigator Fellowship Opportunity with the DSC
This fellowship opportunity is open to MD, PhD, or MD/PhD applicants. Areas of potential research include but are not limited to: iPSC derived neuronal modelling of TSC, characterization of the
Resource
Episode 20: The 2021 Virtual March on Capitol Hill
In the first episode of TSC Now, host Dan Klein dives deep on the upcoming Virtual March on Capitol Hill taking place March 1-5, 2021. Due to the ongoing COVID-19
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 Matters Post
December Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Volunteer Spotlight: Carly Kaye, Community Alliance Chair for Michigan
In addition to her role as Community Alliance Chair for Michigan, Carly Kaye is a leader and innovator in the greater TSC community. Inspired by her son, Logan, Carly is
TSC Matters Post
Ongoing Genetic Study
See below for the ongoing study.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Save the Date for the 2021 Virtual March on Capitol Hill
If you are interested in participating in the Virtual March on Capitol Hill, please contact grc@tscalliance.org.
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
Welcome from Nobelpharma America!
Nobelpharma America is the first global subsidiary of Nobelpharma Co. Ltd (“Nobelpharma”), headquartered in Tokyo, Japan. Founded in 2003, Nobelpharma received its first drug approval in Japan in 2008. Since
TSC Matters Post
December Note from the CEO
In the last edition of TSC Matters back in October, I reflected on all the ways the COVID-19 pandemic has challenged our organization to pivot and how
Resource
Episode 19: Infantile Spasms Awareness Week (#ISAW2020)
In a very special early edition of TSC Now, host Dan Klein explores the topic of infantile spasms (IS) as Infantile Spasms Awareness Week (ISAW), held annually December 1-7 to
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
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
Register Today for a Virtual Research Symposium Hosted by the Tuberous Sclerosis Association (UK)
A virtual event will take place Friday, November 13, 2020 focused on emerging research around TSC and COVID-19, and networking for early career researchers. The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed
TSC Matters Post
October Note from the CEO
This year has challenged us to come up with new ways to bring our community together, to empower those living with TSC and their loved ones and
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
October Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Ongoing Genetic Study
See below for the ongoing study.
TSC Matters Post
Join Us for an Upcoming Adult Topic Call
Are you an independent or semi-independent adult with TSC? If so, please join us for our upcoming free informational adult calls! You can join the call using your computer or dialing
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
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.
Resource
Episode 16: COVID-19 and Back to School
In episode 16 of TSC Now, host Dan Klein talks to two of the TS Alliance’s Education Parent Mentors to better understand how parents should approach making the decision on
TSC Matters Post
Ongoing Genetic Study
See below for the ongoing study.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.
TSC Matters Post
Epilepsy Trial
Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment (Part B) Study Purpose To assess preliminary safety and efficacy of ganaxolone as adjunctive therapy for the treatment of
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 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.
Resource
Episode 15: Managing Behaviors During COVID-19 (Part 2) + A New Partnership with SeizureTracker
In episode 15 of TSC Now, host Dan Klein continues exploring how to manage harmful and disruptive behaviors associated with TSC-associated neuropsychiatric disorders (TAND) during the ongoing COVID-19 pandemic. Then
TSC 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.
Resource
Episode 14: Managing Aggressive and Harmful Behaviors During COVID-19 (Part 1)
In episode 14 of TSC Now, host Dan Klein begins the first of an important two-part discussion focused on how parents can begin to address aggressive and harmful behaviors associated
TSC Matters Post
Transition of Epilepsy Care Questionnaire
Open to adults or caregivers of a child or dependent adult with TSC and seizures.
TSC Matters Post
Epilepsy Trial
Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment (Part B) Study Purpose To assess preliminary safety and efficacy of ganaxolone as adjunctive therapy for the treatment of
TSC Matters Post
Ongoing Genetic Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.
TSC Matters Post
June Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC 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
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 2020 grant cycle. Three award mechanisms are available this year: Exploration – Hypothesis Development Award (up to $150,000
TSC Matters Post
April Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.
TSC Matters Post
April Note from the President & CEO
It is crazy to think that six short weeks ago we were wrapping up an emotional and productive March on Capitol Hill and Spring Board Meeting, which
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
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 2020 grant cycle.
TSC Alert
Reminder: Research Grant LOIs Due April 27
The TSC Alliance has extended the deadline to submit letters of intent for Postdoctoral Fellowships and Early Stage Investigator Research Grants. Learn more about our funding mechanisms and eligibility requirements
TSC Alert
Deadline Extended: Research Grant LOIs Due April 27
The TSC Alliance has extended the deadline to submit letters of intent for Postdoctoral Fellowships and Early Stage Investigator Research Grants. Learn more about our funding mechanisms and eligibility requirements
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
Early Stage Investigator Research Grant LOIs Due April 6
The TSC Alliance is now accepting letters of intent for Postdoctoral Fellowships and Early Stage Investigator Research Grants. Learn more about our funding mechanisms and eligibility requirements on our Grants page.
TSC Matters Post
February Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Ongoing Biosample Studies
See below for ongoing studies.
TSC Matters Post
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.
TSC Matters Post
Ongoing Epilepsy Trials
See below for ongoing trials.
TSC Matters Post
FDA Approves Sabril Label Expansion For Patients 2 To 10 Years Old
On January 24, the TSC Alliance learned the US Food and Drug Administration (FDA) formally approved Lundbeck Pharmaceutical’s label expansion for Sabril® (vigabatrin) to now be available to treat refractory complex
TSC Matters Post
February Global Alliance Update
Last week, TSC Alliance Director of Government & Global Affairs Katie Smith, along with TSC Clinic Director Darcy Krueger, MD, PhD of Cincinnati Children’s Hospital and TAND Unit Director Tanjala T. Gipson, MD
TSC Matters Post
February Note from the President and CEO
Following what was a truly inspiring 45th anniversary year, all of us at the TSC Alliance started this new year motivated to capture that momentum and channel
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
Call for Grant LOIs
The TSC Alliance is now accepting letters of intent for Postdoctoral Fellowships and Early Stage Investigator Research Grants. Learn more about our funding mechanisms and eligibility requirements on our Grants page.
Resource
Episode 9: The State of the TS Alliance
In episode 9 of TSC Now, host Dan Klein talks to Tuberous Sclerosis Alliance President and Chief Executive Officer Kari Luther Rosbeck. They discuss her favorite memories from the organization’s
Team Member
Katie Smith
Katie joined the TSC Alliance staff in 2006. She currently oversees the organization’s international outreach efforts, directs government advocacy efforts and co-chairs TSC International. During her tenure with the TSC
Team Member
Gail Saunders
Gail joined the TSC Alliance in 2005 as the Office Manager, providing administrative and logistical support for the staff and board of directors. Over the years, her enthusiasm grew for
Team Member
Lisa Moss
Lisa joined the TSC Alliance staff in July 2012 and oversees the TSC Alliance’s fundraising efforts to ensure the organization is able to provide essential support services, and drive research
Team Member
Shelly Meitzler
Shelly joined the TSC Alliance in January 2017 after spending 14 years volunteering in the tuberous sclerosis complex (TSC) community. Her professional background is business management. Experiencing the need to
Team Member
Justin Martucci
Justin joined the TSC Alliance in May 2018 as Development Services Manager. Justin supports the efforts of the Development and Finance teams through keeping an up-to-date and clean donor database
Team Member
Dan Klein
Dan started volunteering at the TSC Alliance in 2011 and joined the staff full time in 2012. He has held multiple fundraising and communications positions with the organization, most recently
Team Member
Jaye Isham
Jaye joined the TSC Alliance in 2004 and held several communications positions over the years, most recently as Senior Vice President, Strategic Communications. He was named Chief Outreach Officer (COO)
Team Member
Emebet G/Micheal
Emebet joined the TSC Alliance in May 2017 as a Senior Accountant. She previously worked in various management positions for Cineplex Odeon, Loews and AMC Theatres for 22 years in
Team Member
Zoë Fuchs
Zoë joined the TSC Alliance in 2019 after previously volunteering with the organization. She graduated from the University of California, Santa Barbara with a Bachelor of Science in Chemical Engineering.
Team Member
Dean J. Aguiar, PhD
Dean joined the TSC Alliance in November 2018 with more than 17 years of research and development (R&D) leadership in biopharmaceutical and medical device industries, leading teams and technologies from
Team Member
Steven L. Roberds, PhD
Steve joined the TSC Alliance staff in 2011 as Chief Scientific Officer. In this role, Steve leads the development and execution of the TSC Alliance’s research strategy through partnerships and
Team Member
Kari Luther Rosbeck
Kari has made it her life mission to use her 35 years of nonprofit and volunteer management experience to help create a future where everyone with TSC has what they
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 Matters Post
Baby Brain Imaging and Behavior Study (Baby BIBS)
Researchers at the UCLA Center for Autism Research and Treatment (CART) are looking for families who have a child less than 3 years old and is diagnosed with TSC.
TSC Matters Post
JASPER Early intervention for Tuberous Sclerosis
Additional Funding Available to Support Travel to Participate in an Early Intervention Study for Infants and Toddlers. Researchers from Boston and Los Angeles are studying the benefits of early behavioral
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
Engage Therapeutics Clinical Trial
Engage Therapeutics is a small biotech company working to improve life with epilepsy. Toward this end, they are developing an inhaler rescue therapy that stops seizures in their tracks. If
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
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
45th Anniversary Flashback: The 2010s
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
December Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the
TSC Matters Post
Submit your Nominations for our 2019 Volunteer Awards!
The TSC Alliance will honor up to four individuals, one Community Alliance and one adult with TSC for their outstanding dedication and commitment to the organization during its annual Volunteer
TSC Matters Post
Important Information About Changes to Access and Availability of Generic Everolimus and Afinitor®
As of December 13, 2019, important information is available regarding changes to access and availability of everolimus, a drug used to treat several conditions associated with tuberous sclerosis complex (TSC)
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
Upcoming Community Events
Chicago Post-Holiday Party Sunday, January 12, 2020, 5 to 7:30 pm Alexian Brothers Medical Center Elk Grove Village, IL 60007 Please RSVP by January 6, 2020 with your food contribution and
TSC Matters Post
December Note from the President & CEO
As I reflect on 2019 one theme that runs through most of what we accomplished is the incredible power of collaboration. I initially highlighted this idea in the very first
TSC Alert
Save the Date for the 2020 International LAM Research Conference
Hosted by The LAM Foundation, this conference attracts experts in every facet of clinical investigation and molecular and cellular biology, including clinical trialists, clinical investigators with expertise in interstitial lung disease
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.
Resource
Episode 7: Common Parent/Caregiver Challenges and Advocating for Your Health
In the seventh episode of TSC Now, host Dan Klein explores common challenges parents, caregivers and those affected by tuberous sclerosis complex (TSC) face when managing their health and seeking
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 Society of Nephrology Meeting in Washington, DC (Exhibit Dates: November 7-9, Booth Number: 2906) American Epilepsy Society Annual
TSC Matters Post
45th Anniversary Flashback: The 2000s
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,