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TSC Matters

Archive for the ‘News & Announcements’ Topic

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity. Read More

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 and inspiration to the TSC community.  Ken passed away January 27, 2021 at the amazing age of 90. Ken and his wife Shonnie were first inspired into action by his daughter-in-law, Emily, who served as the Northern California Representative, beginning after her daughter Annie’s diagnosis 1984, and over the next dozen years.  They witnessed how Emily literally spent so much of her time providing support for newly diagnosed families, raising... Read More

CARING through COVID Survey

For many families of children/adults with genetic syndromes associated with developmental disabilities, the impact of COVID-19 restrictions on access to educational and medical services continues and evolves. We would like to learn about the continued experiences of these families after many months of virtual learning and online therapeutics. The new survey is similar to the previous version. It will take 10-20 minutes to complete. The survey is intended both for individuals who completed the previous version as well as new participants. Take the Survey Read More

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care.  Your comments in this online survey will be shared with the TSC Clinic Director and staff.  The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you. Read More

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance seeks to contact individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity. Read More

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 then, Nobelpharma has received approvals for over 15 drugs and devices in Japan across a wide range of indications, bringing life-changing treatments to patients, caregivers, and health care providers. Read More

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care.  Your comments in this online survey will be shared with the TSC 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@tscalliance.org. Take Survey You can also submit a TSC Clinic Comment Form directly to the TSC Alliance to share a compliment or concern about a... Read More

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity. Read More

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity. Read More

TSC Clinic Experience of Care Survey

The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care.  Your comments in this online survey will be shared with the TSC 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@tscalliance.org. Take Survey You can also submit a TSC Clinic Comment Form directly to the TSC Alliance to share a compliment or concern about a... Read More