Tag Archives: natural history database

Episode 18: Understanding COVID-19’s Impact on Those with TSC & LAM

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In episode 18 of TSC Now, host Dan Klein talks to Nishant Gupta, MD, Associate Professor in the Division of Pulmonology, Critical Care and Sleep Medicine at the University of Cincinnati where he serves as the Director of the Interstitial and Rare Lung Disease Program.

We discuss what researchers and clinicians have learned so far about how COVID-19 impacts those with TSC and LAM, what potential future vaccines mean for those affected, and how individuals with TSC and LAM who have already contracted COVID-19, confirmed by testing, can participate in an important Natural History Database study to help us better understand the risk and severity of the virus.

Learn more about the study here: https://www.tsalliance.org/tsc-matters/have-you-or-your-loved-one-with-tsc-been-diagnosed-with-covid-19-2/. If you or your loved one had COVID-19 confirmed by testing and do not go to one of the TSC Clinics listed or have questions, please contact Jo Anne Nakagawa at jnakagawa@tsalliance.org or 1-800-225-6872.

At the end of the podcast I shared some ways you can support the TS Alliance this holiday season and on #GivingTuesday on December 1. Here are four ways you can get involved:

  1. Create a #GivingTuesday Facebook Fundraiser (We created a guide on how to get started here: http://www.tsalliance.org/wp-content/uploads/2020/11/Giving-Tuesday-Instructions-2020.pdf).
  2. Do your holiday shopping using Amazon Smile (We also have a helpful guide on getting started with Amazon Smile here: http://www.tsalliance.org/wp-content/uploads/2020/10/Setting-up-Amazon-Smile.pdf).

  3.  Make a donation using our #GivingTuesday Page

  4. Follow us on Facebook, Twitter and Instagram and encourage your friends and family to follow us too! And while you’re at it, be sure to subscribe to TSC Now so you don’t miss future episodes.

Finally, December 1-7 is Infantile Spasms Awareness Week (ISAW), to learn more about infantile spasms and ISAW 2020 go to https://infantilespasms.org/.

Resources and Links
Check out all of the TS Alliance’s COVID-19 Resources: https://www.tsalliance.org/individuals-families/covid-19/
Dr. Gupta first shared his recommendations earlier this year during a DEA World Forum Webinar, which you can re-watch here: https://youtu.be/Xwj2PiZ6gik
Dr. Gupta presented an update on COVID-19 and LAM at the first Virtual TSC & LAM Conference in September, watch it now here: https://youtu.be/QmS_dQELzA8