Tag Archives: TS Alliance

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 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 13: TSC Global Awareness Month in the Age of COVID-19



In episode 13 of TSC Now, host Dan Klein celebrates TSC Awareness Month and one full year of podcasting by once again reaching out to some of the Tuberous Sclerosis Alliance’s international partners with the help of Katie Smith, TS Alliance Director of Government and Global Affairs, to see how they are recognizing TSC Global Awareness Day on May 15 without being able to meet in person, and how they are supporting those with tuberous sclerosis complex (TSC) and their loved ones during the ongoing COVID-19 pandemic.

First, we speak to Helen Willacy (02:25), President and Co-Founder of TSC NZ in New Zealand. She discusses the unique challenges TSC families face trying to get access to medication, how the pandemic has allowed for expanded use of telemedicine, and how they are connecting with families online. We also talk about how New Zealand was able to stop the spread of the virus quickly and is now beginning to re-open.You can connect with TSC NZ at the links below.

Next, we catch up with Inna Korov and Carol Hoffman of the Tuberous Sclerosis Alliance of Israel (11:48), the TS Alliance’s first global affiliate. They share how physicians have been able to share resources with families via Zoom in Hebrew and how those with TSC have connected and comforted each other through WhatsApp. You can connect with the TS Alliance at the links below.

We finish our world tour by talking to Luke Langlands (20:23), Head of Communications and Engagement at the UK Tuberous Sclerosis Association (UK TSA). He shares the tough, but necessary actions the organization has taken to ensure its long-term existence and allow them to continue to offer critical services to those affected by TSC throughout the UK. He also talks about the incredible response they’ve seen from their online events and how they are preparing for a staggered re-opening in the future. Learn more about UK TSA, the 2020 International TSC Research Conference postponement, and their Outlook meeting at the links below.

The episode concludes by highlighting Ryan and Andrea Beebe (35:28), whose Getting Saucy with Parker B Fundraiser has raised over $50,000 during the TSC Awareness Month of Caring. They share how they came up with the concept for the fundraiser, what have been some of the better reactions of those participating and why they think it has been so successful. There is still time to support their fundraiser and help them smash their goal even more, learn more at the link below.

Resources and Links
TSC NZ Website: https://www.tsc.org.nz/
TSC NZ resources on COVID-19: https://www.tsc.org.nz/post/coronavirus-and-tsc-information-for-the-tsc-community
TSC NZ on Twitter: https://twitter.com/tsc_nz
TSC NZ on Facebook: https://www.facebook.com/TSCNZ/

DEA World Forums: COVID-19 Management & TSC co-hosted with TSC International (TSCi) and the European Tuberous Sclerosis Complex Association (E-TSC): https://www.youtube.com/watch?v=Xwj2PiZ6gik&t=5s
DEA World Forums: How the Consensus Guidelines Improve Treatment and Care for Individuals with TSC co-hosted with TSC International (TSCi) and the European Tuberous Sclerosis Complex Association (E-TSC): https://www.youtube.com/watch?v=-NIgzW8Ucv0&t=3s

TS Alliance of Israel Website: http://tsc.org.il/
TS Alliance of Israel COVID-19 resources, including a recording of their webinar with Dr. Tal Gilboa: http://tsc.org.il/PAGE30.asp
TS Alliance of Israel on Facebook: https://www.facebook.com/groups/tsc.org.il/

UK TSA Website: https://tuberous-sclerosis.org/
Updated Information on the 2020 International TSC Research Conference: https://tuberous-sclerosis.org/for-professionals/2020-conference/
UK TSA COVID-19 resources: https://tuberous-sclerosis.org/news-coronavirus-tsc/
Outlook 2020 Virtual Meeting Session Recordings: https://tuberous-sclerosis.org/outlook-virtual-2020-sessions/
UK TSA on Facebook: https://www.facebook.com/thetsauk
UK TSA on Twitter: https://twitter.com/UKTSA

Getting Saucy With Parker B Fundraiser: https://www.facebook.com/donate/642664029849293/10106189288438264/
Getting Saucy Interview on Delmarva Life: https://www.youtube.com/watch?v=OIuMaHaVQGs&fbclid=IwAR3WFik6v24Rt0ZvKpgsdzr4drBO5mI9OJ89t-QhqMdObdibFUXjS4WnqHg

TSC Awareness Month of Caring Website: https://give.tsalliance.org/campaign/tsc-global-awareness-day-of-caring/c281515

This episode was sponsored by:

   

   


Episode 12: Living with TSC During COVID-19



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:

This episode was sponsored by:

       


Episode 8: Excerpts from AES and the Current State of Epilepsy Research



In the eighth episode of TSC Now, host Dan Klein catches up with TS Alliance partners at the annual American Epilepsy Society Meeting (AES), the largest gathering on epilepsy in the world, which was held December 6-10 in Baltimore. Seizures remain one of the most common neurological features of TSC, occurring in 85% of individuals with TSC and more than 50% of individuals with TSC who have epilepsy will not respond to standard antiepileptic medications and have intractable epilepsy. Therefore, this meeting was a good opportunity to explore the current state of epilepsy research, what gaps still exist and what’s on the horizon. Continue reading Episode 8: Excerpts from AES and the Current State of Epilepsy Research


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 care from physicians.

First, he has a conversation with Paul Mullin, MD, Director of Neurology and Epilepsy at Medical Associates of the Hudson Valley (01:22). They discuss the results of a survey conducted by Aquestive Therapeutics on some of the most common challenges parents face when trying to administer medication to children with epilepsy and how new technology can help alleviate some of these challenges. They also talk about what parents and caregivers can do to be proactive in addressing seizures and working with their doctor. Dr. Mullin also shares several online resources where parents can get accurate and reliable information and advice, including the Epilepsy Foundation, the National Organization for Rare Disorders (NORD), the National Institute of Neurological Disorders and Stroke (NINDS) and the LGS Foundation.

Next, Dan talks to Peter Crino, MD, PhD, Professor and Chair of the Department of Neurology at the University of Maryland School of Medicine, Director of the TSC Center of Maryland, and a member of the TS Alliance Board of Directors (20:12). We discuss the process of transitioning a patient with TSC from pediatric to adult care, some of the challenges associated with that transition, and how parents and those affected can start preparing to mitigate those challenges. We also talked about how adults with TSC can best manage their care and Dr. Crino emphasizes the importance of following the Consensus Guidelines for Diagnosis, Surveillance and Management of TSC to ensure that different manifestations of the disease are being monitored and managed appropriately throughout one’s lifetime. Finally, we discuss the role telemedicine may play in expanding access to TSC experts.

This episode was sponsored by:

Resources:

Epilepsy Foundation website: https://www.epilepsy.com/

NORD website: https://rarediseases.org/

NINDS website: https://www.ninds.nih.gov/

LGS Foundation website: https://www.lgsfoundation.org/

TSC Center of Maryland website: https://www.umms.org/ummc/health-services/neurology/services/tuberous-sclerosis

Consensus Guidelines for Surveillance and Treatment: https://www.tsalliance.org/individuals-families/treatment-guidelines/consensus-guidelines-for-diagnosis-surveillance-and-management-of-tsc/

Transition resources: https://www.tsalliance.org/individuals-families/young-adults/


Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND)



In episode 6 of TSCnow, host Dan Klein talks to Petrus de Vries, MBChB, MRCPsych, PhD, Sue Struengmann Professor of Child and Adolescent Psychiatry at the University of Capetown in South Africa. They discuss tuberous sclerosis complex (TSC)-associated neuropsychiatric disorders, otherwise known as TAND. TAND refers to a whole spectrum of neurological manifestations of TSC, including aggressive behaviors, autism spectrum disorder (ASD), intellectual disabilities, psychiatric disorders, neuropsychological deficits, as well as school and occupational difficulties. Most people with TSC suffer from one or several of these manifestations and it is often one of the most impacting aspect of the disease for both children and adults affected. They talk about the six levels of TAND (behavioral, intellectual, neuropsychological, psychiatric, academic and psychosocial) and the different manifestations people experience within each level. He also talks about the challenges families and caregivers face when seeking treatment for these manifestations.

In response to the growing need of those affected, Dr. de Vries shares how he worked with other experts at the 2012 Consensus Conference to develop the TAND checklist, a tool to help clinicians identify what aspects of TAND a person is struggling with and develop a personal profile for those affected, and the corresponding consensus guidelines for when and how to use the checklist. He also discusses that, while no two people are affected the same and this uniqueness poses significant challenges for diagnosis and intervention, recent research suggests that there are several TAND “clusters” that those affected generally fall into.

Finally, Dr. de Vries discusses the TANDem Project, an international collaboration of families affected by TSC, researchers and clinicians to provide scientific evidence for greater TAND intervention and treatment. The project is being headed by Drs. de Vries and Anna Jansen at UZ Brussels.

To learn more about TAND visit: www.tsalliance.org/tand

To download the TAND Checklist visit: https://bit.ly/2ObP3wn

To learn more about TAND clusters visit: https://www.ncbi.nlm.nih.gov/pubmed/29530301

Learn more about the TANDem project here: https://bit.ly/2MkQyqy


Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School



In the fourth episode of TSC Now, host Dan Klein talks to Lilian Ansari, MS, Special Needs Advocate, Co-Chair of the TS Alliance of Northern California and Education Parent Mentor. They discuss why she volunteered as an Education Parent Mentor, what types of challenges kids with TSC face in the classroom, and what resources and benefits are available to families under the Individuals with Disabilities Education Act. She also shares what advice she gives to parents as they are preparing for an Individualized Education Program (IEP) meeting, including to record the meeting, take time to review the plan and get everything agreed upon in writing. Finally, she encourages others to volunteer as Education Parent Mentors and provide support in their communities.

If your child is having school issues please call Dena Hook, Vice President of Support Services, at (800) 225-6872 or email her at dhook@tsalliance.org. You may fax documents, such as IEP reports or other correspondence, to Dena at (888) 330-1853.

To learn more about school issues visit: https://www.tsalliance.org/individuals-families/school-issues/

To learn more about the Education Parent Mentor Program and to apply visit: https://www.tsalliance.org/engage/volunteer-opportunities/educator-parent-mentor/


Episode 3: The 2019 International TSC Research Conference



In the third episode of TSC Now, host Dan Klein, Director of Digital Platforms for the Tuberous Sclerosis Alliance, talks to the two co-chairs of the 2019 International TSC Research Conference: Changing the Course of TSC. Continue reading Episode 3: The 2019 International TSC Research Conference