Tag Archives: COVID-19

Episode 14: Managing Aggressive and Harmful Behaviors During COVID-19 (Part 1)

July 1, 2020Episodesaggression, anxiety, behaviors, COVID-19, neuropsychiatric disorder, sleeplessness, TAND, TS Alliance, TSC, tsc-associated neuropsychiatric disorders, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complextsc-now

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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 with TSC-associated neuropsychiatric disorders (TAND), while continuing to shelter at home during the ongoing COVID-19 pandemic.

For part one of this conversation, Dan is joined by Nathan Call, PhD, BCBA-D, Clinical Director at the Marcus Autism Center and Associate Professor at Emory University School of Medicine, Department of Pediatrics. They talk about how the pandemic has created a perfect storm of altered routines, restrictions and barriers to specialists that can lead to an increase in the frequency and severity of behaviors. Dr. Call also shares the importance of prioritizing what behaviors to address and being flexible with the uncertainty. Finally, Dr. Call talks about some of the barriers preventing families from getting access to behavioral specialists and medication to manage their kid’s behaviors.

The TS Alliance is always here to provide support to parents who are dealing with challenging behaviors or are in crisis. You can call us toll free at (800) 225-6872. Be sure to also check out our website for more information on TAND.

Resources
TS Alliance TAND web page featuring recordings of TAND webinars: https://www.tsalliance.org/about-tsc/signs-and-symptoms-of-tsc/brain-and-neurological-function/tand/
How to Manage Disruptive and Harmful Behavior During COVID-19 Interview with Dr. Call courtesy of the Child Neurology Foundation: https://www.youtube.com/watch?time_continue=688&v=m8tL2xad5i8&feature=emb_logo
Webinar on Effective Behavioral Treatments for TSC-Associated Neuropsychiatric Disorders (TAND) Issues in TSC: https://www.youtube.com/watch?v=c5MWX7VEni4&feature=emb_logo

Episode 12: Living with TSC During COVID-19

April 26, 2020EpisodesAMLs, coronavirus, COVID-19, depression, patient advocacy, TAND, telehealth, telemedicine, TS Alliance, TSC, tsc-associated neuropsychiatric disorders, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complextsc-now

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In episode 12 of TSC Now, host Dan Klein does a deep dive on the ongoing COVID-19 crisis and its impact on the tuberous sclerosis complex (TSC) community. Throughout the episode he shares resources the Tuberous Sclerosis Alliance (TS Alliance) has developed to support the community during the pandemic, and plays clips from past webinars hosted by the TS Alliance and our partner advocacy organizations. He also interviews two guests to better understand how COVID-19 is affecting both individuals and families and TSC clinics.

First he speaks with Laura Lubbers, PhD (3:50), Chief Scientific Officer at Citizens United for Research in Epilepsy (CURE). Laura’s sister Ellyn is an adult with TSC and was taken to the hospital earlier this month when she developed a fever and later tested positive for COVID-19. Laura shares about what that experience was like and how she helped coordinate Ellyn’s care remotely. Fore more resources from CURE visit: https://www.cureepilepsy.org/for-patients/covid-19-and-epilepsy/.

Next, he speaks to Karen Agricola, MSN, APRN, FNP-BC (21:20), a family nurse practitioner and coordinator at The Tuberous Sclerosis Clinic at Cincinnati Children’s Hospital. She shares how the clinic has adapted care during the pandemic and offers advice on how to stay safe and utilize telemedicine to maintain care.

Dan closes out the episode by playing a clip of TS Alliance President and CEO Kari Luther Rosbeck (37:30), who introduces our TSC Awareness Month of Caring and shares how you can support the TS Alliance throughout the month of May.

Finally, be sure to join us for our next Virtual Town Hall on Friday, May 1: “Accessibility to Treatments During COVID-19,” co-sponsored by the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation and Tuberous Sclerosis Alliance. You can register now here: https://zoom.us/meeting/register/tJ0of-ipqT4iE9KhuijP08JP9wL3j-_tmRzO

Resources and Links:

All of the TS Alliance’s COVID-19 resources can be found here: https://www.tsalliance.org/individuals-families/covid-19/
Video recordings of previous webinars can be found here: https://www.tsalliance.org/covid-19-webinar-and-virtual-town-hall-recordings/
A schedule of upcoming webinars can be found here: https://www.tsalliance.org/upcoming-covid-19-and-tsc-webinars-and-virtual-town-halls/
A recording of the Virtual Town Hall “TSC/LAM Virtual Town Hall: A COVID-19 Update,” held in partnership with The LAM Foundation, can be found here: https://youtu.be/pPHtFVc4vPs
For COVID-19 resources from our partners at Citizens United for Research in Epilepsy (CURE), visit: https://www.cureepilepsy.org/for-patients/covid-19-and-epilepsy/
A recording of the webinar “Managing Anxiety During COVID-19,” presented by Tanjala T. Gipson, MD of LeBonheur Children’s Hospital, can be found here: https://youtu.be/m4rHD0Zhdpc
A recording of the Virtual Town Hall “Accessibility to Care During COVID-19,” held in partnership with the Child Neurology Foundation and Dup15q Alliance, can be found here: https://youtu.be/-4s4mV_u9g4
To learn how you can get involved in our TSC Awareness Month of Caring visit: https://give.tsalliance.org/campaign/tsc-global-awareness-day-of-caring/c281515

This episode was sponsored by:

Episode 11: A #March4TSCresearch Recap & Update on COVID-19

March 31, 2020Episodes#march4TSCresearch, advocacy, clinical research, coronavirus, COVID-19, federally-funded research, government advocacy, March on Capitol Hill, medical research, rare disease research, TSC, TSC research, tuberous sclerosis, tuberous sclerosis complextsc-now

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In episode 11 of TSC Now, host Dan Klein recaps our annual March on Capitol Hill, which took place on March 4, 2020 in Washington, DC and brought together more than 100 volunteers from across the country to advocate for continued funding for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense. He then shares resources the TS Alliance has created to address the ongoing Coronavirus (COVID-19) pandemic.

First, Dan talks to Mark Vieth (2:04), Senior Vice President at Cavarocchi Ruscio Dennis Associates, who serves as a consultant for the TS Alliance’s advocacy efforts and helps prepare our volunteers for their meetings with their representatives. They discuss what goes on at the Training Dinner before March on Capitol Hill, what key messages volunteers should bring to their meetings, and why this effort has been so successful over the years.

Next, Dan interviews Bridget Britt (10:54), an advocate and mom from California. She shares why she advocates and how coming to March on Capitol Hill gives her strength and purpose.

Dan then talks to Sam Barth (15:42), a graduate student working in Kim Raab-Graham’s lab at Wake Forest University Medical School. Sam shares how the March on Capitol Hill provides meaningful context for the work he does in the lab and also discusses how the funding his mentor Kim received through the TSCRP helped generate new insights on TSC.

Dan then shares resources the TS Alliance has developed in response to the ongoing COVID-19 pandemic (25:44), including a FAQ guide for parents and caregivers, resources for TSC medical professionals, and a schedule of upcoming webinars, virtual Town Halls and Open Forums. All of these resources can be found at tsalliance.org/COVID-19.

Finally, Dan continues his Get to Know the TS Alliance segment by talking to Justin Martucci (28:40), Development Services Manager at the TS Alliance. They talk about how Justin has spearheaded the TS Alliance database cleanup and transition to new platforms, what he does when he’s not in the office, and how he is managing working from home during the pandemic.

In the April episode of TSC Now, Dan will be diving deeper into how the COVID-19 pandemic is affecting the TSC community and he wants to hear from you! Leave a voicemail at (240) 638-4644 with your first name, where you are calling from and how the pandemic has affected you, and your call may be played on the April episode!

March on Capitol Hill Resources:
For more information on the Tuberous Sclerosis Complex Research Program (TSCRP), visit: https://cdmrp.army.mil/tscrp/default
To read about Dr. Kim Raab-Graham’s research funded by the TSCRP, visit: https://cdmrp.army.mil/tscrp/research_highlights/17graham_highlight
For more information on the TS Alliance’s Government Advocacy Program, visit: https://www.tsalliance.org/engage/government-advocacy/
If you are interested in participating in our government advocacy program, send us an email to grc@tsalliance.org.

COVID-19 Resources:
For all of the TS Alliance’s resources on COVID-19, visit: tsalliance.org/COVID-19
To download a FAQ guide for parents and caregivers, visit: http://www.tsalliance.org/wp-content/uploads/2020/03/COVID-19-FAQ.pdf
For resources for TSC medical professionals, go to: https://www.tsalliance.org/covid-19-resources-for-tsc-medical-professionals/
To see a schedule and register for our upcoming webinars, visit: https://www.tsalliance.org/upcoming-covid-19-and-tsc-webinars-and-virtual-town-halls/
To find recordings of previous webinars, visit: https://www.tsalliance.org/covid-19-webinar-and-virtual-town-hall-recordings/