TSC Matters

Archive for the ‘News & Announcements’ Topic

TSC Clinic Experience of Care Survey

The TS 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 Clinic Director and staff.  The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you.   We invite you to complete this survey any time after you’ve been to the TSC Clinic. If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tsalliance.org. Read More

TS Alliance Announces New Improving Partnerships and Lives Grant

The TS 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 a competitive application process.  Our IPaLG is invested in high-performing nonprofit organizations that provide programs and services aligned with improving lives for children and adults with disabilities with a priority for individuals living with TSC. Our four strategic priority areas of Academic Support for Students/Families Within the School System, Skills and Advocacy Support for Individuals/Families, Social and Functional Skills Opportunities, and Basic Needs Support. Learn More Read More

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) such as subependymal giant cell astrocytomas (SEGAs), kidney angiomyolipomas (AMLs) and certain types of seizures. Individuals with TSC may also use everolimus to treat other clinical manifestations of the disease. Read More

TSC Clinic Experience of Care Survey

The TS 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 Clinic Director and staff.  The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you.   We invite you to complete this survey any time after you’ve been to the TSC Clinic. If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tsalliance.org. Read More

Listen and Subscribe to TSC Now

TSC Now is the TS Alliance’s podcast series, which features interviews with clinicians, researchers, TS Alliance staff and others on topics like TSC research, epilepsy surgery options, educational advocacy, TSC-associated Neuropsychiatric Disorders (TAND), seizure control and more. Haven’t listened yet? Check out our last three episodes: Read More

Changes to TSC Matters in 2020

The TS 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 to ensure you don’t miss future emails. If you do not receive the February TSC Matters or have any issues with the newsletter, please let us know: tscmatters@tsalliance.org. Be sure to add TSC Matters to your safe sender list so you don’t miss future emails.   Read More

TSC Clinic Experience of Care Survey

The TS 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 Clinic Director and staff.  The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you.   We invite you to complete this survey any time after you’ve been to the TSC Clinic. If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tsalliance.org. Take the Survey Read More

Grant Opportunities for Families Impacted by Infantile Spasms

Our friends at the Child Neurology Foundation, in partnership with the Harnett Family and to commemorate Infantile Spasms Awareness Week (December 1-7), are offering a $1,000 grant to a family impacted by infantile spasms. The grant was founded by Michael Harnett to honor the life and memory of his nephew, Brendan Michael Harnett, who passed away from infantile spasms before his first birthday. Read More

TS Alliance Announces New TSC Centers of Excellence

The Tuberous Sclerosis 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 fulfills each of 11 Core Standards and 14 Gold Standards developed by the TS Alliance. The following 10 TSC Clinics have earned the TSC Center of Excellence Designation: University of Alabama TSC Clinic – Birmingham; Northern California TSC Clinic at Lucille Packard Children’s Hospital; – Stanford; University of Maryland, Baltimore; The Herscot Center for TSC – Boston; Boston Children’s Hospital Multi-Disciplinary TS Program; TSC Clinic Without Walls – St.... Read More