Tag Archives: COVID-19

Episode 35: The Past, Present and Future of Autism Research in TSC

April 30, 2022Episodesautism, autism spectrum disorder, behaviors, clinical research, coronavirus, COVID-19, medical research, Newborn Screening, rare disease, TSC, TSC Alliance, tuberous sclerosis, tuberous sclerosis complextsc-now

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In this episode of TSC Now, host Dan Klein recognizes World Autism Month by taking a deep dive on the past, present and future of autism spectrum disorder (ASD) research in TSC. Dan talks to Shafali Jeste, MD, Chief of Neurology and Las Madrinas Chair at the Children’s Hospital of Los Angeles and Professor of Neurology and Pediatrics at Keck School of Medicine of USC.

Dr. Jeste shares what first sparked her interest in autism and her early work on the characterization of autism at Boston Children’s Hospital, subsequent studies looking for biomarkers of autism, and how the discovery of those biomarkers paved the way for current early intervention studies, including the JASPER Early Intervention for Tuberous Sclerosis Complex (JETS) Study. She also talks about how the JETS Study pivoted to remote participation to help enrollment, and how researchers need to do more to reduce barriers for clinical trials and recruit diverse participation.

Enrollment is ending soon on the JETS Study, learn more about the study and how to participate here: https://www.jetsstudy.org/

As part of the weekend’s festivities we will be hosting three in-person events at West Chester, PA; Carrollton, TX; and Irwindale, CA! Simply choose the location you’d like to attend when you register. You can also participate virtually in your neighborhood, around your house or wherever you are!

Learn more at stepforwardtocuretsc.org.

You don’t want to miss the 2022 World Tuberous Sclerosis Complex (TSC) Conference, July 28-31, 2022, at the Hilton Anatole Hotel in Dallas, TX, co-hosted by Tuberous Sclerosis Complex International (TSCi). The conference will bring together 1,000 participants from around the globe, including families and individuals with TSC, caregivers, healthcare professionals, researchers, a wide array of exhibitors and others. Register by June 1, 2022 to get the best price!

Register Today!

Episode 32: The 2022 World TSC Conference

January 28, 2022Episodesclinical research, coronavirus, COVID-19, epilepsy, infantile spasms, medical research, rare disease, TAND, TSC, TSC Alliance, TSC research, tsc-associated neuropsychiatric disorders, tuberous sclerosis, tuberous sclerosis complex, world conference, world tsc conferencetsc-now

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In the first episode of TSC Now in 2022, host Dan Klein provides an overview of the upcoming 2022 World TSC Conference, co-hosted by Tuberous Sclerosis Complex International (TSCi), which will be held July 28-31, 2022 and will bring together 1,000 participants from around the globe, including families and individuals with TSC, caregivers, healthcare professionals, researchers, a wide array of exhibitors, and others. Thank you to Title Sponsor Jazz Pharmaceuticals and Presenting Sponsor Nobelpharma for making this incredible conference possible.

Dan interviews Shelly Meitzler, Director, Community Education & Resources at the TSC Alliance® and Co-Chair of the conference about how the conference is structured, what sorts of topics will be covered, what social events are happening at the conference and how people can participate both in person and remotely. Shelly also shares why she thinks this is one of the most important events the TSC Alliance hosts and reflects on some of her favorite moments from the last World TSC Conference in 2018.

Conference registration is now open, register today! The early bird registration deadline is June 1, 2022. Also, be sure to book your room with the Hilton Anatole through our link to get our special rate.

Thanks to the generous support from the Foglia Family Foundation and the TSC Alliance Endowment Fund to the Bcureful Travel Fund, the TSC Alliance will provide a limited number of scholarships in memory of Ken Johnson to individuals or families who might otherwise not be able to attend the 2022 World TSC Conference. Scholarship applications are available here. All applications are due by March 1, 2022.

Resources and Links:

Learn more about everything the 2022 World TSC Conference has to offer at the conference website: https://web.cvent.com/event/6f99d393-3d9c-4d2c-a09c-a71a78986884/summary
You can also learn about conference in the latest issue of Perspective Magazine: https://online.fliphtml5.com/tosk/pfwf/#p=1
See photos from the 2018 World TSC Conference here: https://2018worldtscconference.shutterfly.com/

Episode 27: Going Back to School and Caring for the Caregiver

September 1, 2021Episodesadvocacy, anxiety, coronavirus, COVID-19, depression, educational advocacy, IDEA Act, IEP, IEPs, Individual Education Plans, Individuals with Disabilities Education Act, stress, trauma, TSC, TSC Alliance, tuberous sclerosis, tuberous sclerosis complextsc-now

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In Episode 27 of TSC Now, host Dan Klein learns how parents can prepare for the start of a new school year despite the ongoing pandemic. Dan also talks to a licensed professional counselor to get advice on how parents and caregivers can cope with the stress, anxiety and trauma the last year and a half has caused, so that they are looking out for their own well-being in addition to supporting their loved ones with TSC.

First, Dan talked to Lilian Ansari, TSC Alliance Community Programs Resource Advisor (01:13). She gives helpful advice and tips on making decisions about in-person schooling, ensuring that Individualized Education Programs (IEPs) make up for lost learning that may have occurred while students were at home, and how parents can most effectively communicate with their IEP team. Lilian also shares the resources and support available from the TSC Alliance to help parents effectively advocate for their kids in their school system.

You can access all of our School resources here. If you have general school-related questions you can call Shelly Meitzler, Community Program Manager East, at (800) 225-6872 or email her at smeitzler@tscalliance.org.

Then, Dan talks to Latrice Hamilton, a licensed professional counselor at Journey to New Beginnings. With many TSC caregivers feeling the stress and anxiety of the ongoing pandemic in addition to sending kids back to school, Latrice offers some helpful advice on how to manage stress, communicate effectively with loved ones, and ask for help so that parents can make sure they are taking care of their own mental well-being in addition to caring for their loved ones with TSC.

All of the TSC Alliance’s COVID-19 resources can be found at www.tscalliance.org/covid-19. If you need immediate support from the TSC Alliance you can call our emergency hotline 9 am – 9 pm Eastern: (240) 463-7250.

Resources and Links

TSC Alliance Education Publications: https://www.tscalliance.org/individuals-families/school-issues/
TSC Alliance IEP Intake Form: https://www.tscalliance.org/iep-intake-form/
TSC Now Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School with Lilian Ansari: https://tsc-now.blubrry.net/2019/08/16/episode-4-educational-issues-in-tsc-and-how-to-advocate-for-your-child-with-lilian-ansari/
ABC to SAP: Why Your Child Needs a Seizure Action Plan Webinar: https://youtu.be/V1h7rVo58Po
SAP Coalition Virtual Backpack: https://seizureactionplans.org/virtual-backpack/
Butterfly Hug Method for Bilateral Stimulation: https://emdrfoundation.org/toolkit/butterfly-hug.pdf

Episode 25: Lymphangioleiomyomatosis & Worldwide LAM Awareness Month (#WWLAM)

June 30, 2021Episodes#WWLAM, advocacy, clinical research, clinical trials, COVID-19, LAM, lung health, lymphangioleiomyomatosis, medical research, preclinical research, rare disease, The LAM Foundation, TSC, TSC Alliance, tuberous sclerosis, tuberous sclerosis complextsc-now

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In Episode 25 of TSC Now, host Dan Klein recognizes Worldwide LAM Awareness Month (#WWLAM) by focusing on lymphangioleiomyomatosis (LAM), a rare lung disease affecting women that is characterized by an abnormal growth of smooth muscle cells, especially in the lungs, lymphatic system and kidneys. LAM is caused by mutations in the same gene(s) as TSC and is a common manifestation for women with TSC but can also occur sporadically with no other TSC manifestations. To help raise awareness of LAM on the last day of Worldwide LAM Awareness Day, this episode will focus exclusively on LAM, research being done to develop new treatments and ultimately a cure, and the organization that is leading the charge to improve the lives of women with LAM in the US.

First, Dan talks to Sue Sherman, MHA, Chief Executive Officer of The LAM Foundation (02:18). The LAM Foundation was founded in 1995 by a mother of a woman with LAM with a mission to urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis through advocacy and the funding of promising research. They are dedicated to serving the scientific, medical and patient communities by offering information, resources and a worldwide network of hope and support. They discuss how The LAM Foundation has changed over the years, how their investment in research has helped pave the way for breakthroughs, how the organization pivoted during the COVID-19 pandemic, and how they are raising awareness of LAM during Worldwide LAM Awareness month.

Next, Dan talks to Hilaire Lam, PhD (14:22), Research Associate in the Division of Pulmonary and Critical Care Medicine at Brigham and Women’s Hospital and an instructor in medicine at Harvard Medical School. The ultimate goal of Dr. Lam’s research is to leverage mTORC1-driven mitochondrial alterations to uncover therapeutic targets for TSC and LAM. She shares more about the aims of her research, how she first became interested in LAM, what gaps exist in our understanding of LAM and how researchers are currently looking to address those outstanding questions to develop new therapies. She also discusses how she is motivated by women living with LAM and how their relentlessness inspires her to help find a cure.

Earlier this month in recognition of Worldwide LAM Awareness Month, the TSC Alliance hosted an e-webinar titled “LAM in TSC: Surveillance, Treatment and Research” presented by Souheil Y. El-Chemaly, MD, Clinical Director of the Center for LAM Research and Clinical Care at Brigham and Women’s Hospital. The webinar covered surveillance, management and treatment recommendations based on the latest consensus guidelines, clinical trials currently taking place and a look to the future of research in LAM. A recording of the presentation will be available on our e-webinars website soon at tscalliance.org/e-webinars.

Resources and Links

Visit The LAM Foundation’s website: https://thelamfoundation.org/
Learn more about Worldwide LAM Awareness Month: https://thelamfoundation.org/WorldwideLAMAwarenessMonth
Learn more about LAM in TSC: https://www.tscalliance.org/about-tsc/signs-and-symptoms-of-tsc/lungs/
Follow The LAM Foundation on social media:
- Facebook – https://www.facebook.com/TheLAMFoundation
- Twitter – https://twitter.com/LAMFoundation
- Instagram – https://www.instagram.com/thelamfoundation/
- LinkedIn – https://www.linkedin.com/company/the-lam-foundation/
- YouTube – https://www.youtube.com/channel/UCYldYVWkpHqEvL0ETHND43g
Check out Journeys, a comprehensive blog on LAM research, patient advocacy, education and awareness provided by The LAM Foundation: https://thelamfoundation.org/Blog
Join The LAM Foundation Community to receive their emails: https://www.thelamfoundation.org/Take-Action/Join-The-LAM-Foundation-Community

Episode 22: Overcoming Hurdles with Health Plans and Specialty Pharmacies

March 30, 2021Episodesbehaviors, COVID-19, epilepsy, epilepsy medication, insurance issues, medication access, medications, specialty pharmacies, TS Alliance, TSC, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complextsc-now

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In Episode 22 of TSC Now, host Dan Klein explores overcoming hurdles in healthcare, specifically to help parents/caregivers and individuals with tuberous sclerosis complex (TSC) navigate issues with access to medications, changes to their health plans and how to best communicate with specialty pharmacies. This episode is sponsored by Greenwich Biosciences.

Disclaimer: Greenwich Biosciences utilized Precision Value and Health’s services to gather and respond to the questions being discussed on this podcast. The opinions expressed are those of the speakers individually based on their experience and do not reflect the policies or positions of the speakers’ employers or of Greenwich Biosciences. The following content is for informational purposes only and does not guarantee access or coverage of any product.

First, to provide some context on what access challenges can be like for individuals and families, Dan talked to Shelly Meitzler (01:40), TS Alliance Regional Program Manager East and mom to Ashlin and Mason with TSC. Shelly shares about a recent challenging experience refilling a prescription for Ashlin earlier this year. She talks about where she hit roadblocks, how she felt navigating the insurance and pharmacy system, and how she ultimately got resolution. Her story highlights several common hurdles experienced by many families, including problems when switching insurance plans, not knowing when a prior authorization is required, trying to figure out who your care team is at your pharmacy, and finally dealing with a retail pharmacy versus a specialty pharmacy.

Then, to tackle common questions, some of which were mentioned in Shelly’s story, Dan speaks to two former payers, Hetty Lima and Kellie Rademacher from Precision Value and Health (17:44). Building off of their extensive pharmacy knowledge, Hetty and Kellie answer a number of questions members have when dealing with access issues, such as:

What do I need to do if my health plan changes?
What do I do when my medication is no longer covered by my insurance plan?
How do I navigate having two different health plans?
How do I know when a medication requires a prior authorization, step therapy, or has a quantity limit or any other type of rule or edit that could impact access?
Where can I find available resources if I need emergency access to my medications?

This conversation builds off of an E-Webinar from earlier this year, Overcoming Hurdles: Insurance, Scripts and Specialty Pharmacy, where Jeff Krol, VP of Market Access & Payer Strategy at Greenwich Biosciences, and Ashley Pounders, MSN, FNP, TS Alliance Director of Medical Affairs, provide useful tips on navigating the complex prescription insurance coverage, scripts and specialty pharmacy. We encourage you to re-watch the recording for more information and resources on this topic.

Finally, if you are at risk of running out of a medication for you or your loved one and need assistance, please contact us on our emergency line: (240) 463-7250. That number is available 9 AM to 9 PM Eastern and someone from our team can help.

Resources and Links

Overcoming Hurdles: Insurance, Scripts and Specialty Pharmacy E-Webinar: https://youtu.be/Opik3h7Z4ek
- Download the slides from the presentation: http://www.tsalliance.org/wp-content/uploads/2021/02/GRNEPXLA20011_002-TS-Alliance-Webinar-Presentation-FINAL.pdf

This episode was sponsored by:

Episode 19: Infantile Spasms Awareness Week (#ISAW2020)

December 8, 2020EpisodesCOVID-19, epilepsy, epilepsy medication, infantile spasms, Infantile Spasms Action Network, Infantile Spasms Awareness Week, IS, seizures, TS Alliance, TSCtsc-now

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In a very special early edition of TSC Now, host Dan Klein explores the topic of infantile spasms (IS) as Infantile Spasms Awareness Week (ISAW), held annually December 1-7 to raise awareness of IS with both parents/caregivers and frontline physicians, comes to a close. To learn more about infantile spasms go to www.infantilespasms.org.

First, Dan talks to Kelly Knupp, MD, Associate Professor of Pediatrics and Neurology at the University of Colorado Anschutz Medical Campus and member of Infantile Spasms Action Network (ISAN) (01:23). She discusses what infantile spasms are, what they look like and are sometimes misdiagnosed as, and why they are so serious to the cognitive development of babies. She also explains what tests need to be done to confirm a diagnosis, what first line treatments are available, and why early intervention is so important. Finally, she offers advice to parents who suspect their child might be having spasms, and urges all parents who are concerned to first take a video of the strange behavior to share with their doctor and then don’t delay in seeking care despite the ongoing COVID-19 pandemic.

Then, Dan talks to Ashley Callahan of St. Augustine, Florida (14:53). In June when her daughter Kaylee was 4 months old, Ashely noticed Kaylee making strange repetitive eye movements, which prompted a trip to the emergency room despite the COVID-19 pandemic and eventually a diagnosis of infantile spasms. Ashley shares what led to the decision to take Kaylee to the emergency room, what it was like getting a diagnosis of IS, and how she has found support through groups online. She also shares her advice for other parents who may be worried about their child and encourages them to trust their instincts.

Throughout Infantile Spasms Awareness Week, the TS Alliance and other ISAN partners have made a coordinated effort to develop resources for families and to generate coverage of this important initiative. Below are some links to some of these resources and coverage of #ISAW2020. Our deepest thanks to everyone who helped raise awareness of infantile spasms this year.

Resources and Links

TS Alliance President and CEO Kari Rosbeck joined Dr. Rahat Sayyad, host of the DoctorMommySpeaks podcast, to talk about infantile Spasms: https://podcasts.apple.com/us/podcast/ep-16-how-to-identify-infantile-spasms-take-action/id1524071289?i=1000500499737
Kari also spoke to Dr. Elliot Berlin, host of the Informed Pregnancy Podcast: https://www.informedpregnancy.com/listen/episode/3a869a0f/infantile-spasms-kari-rosbeck
Dr. Martina Bebin, MD, MPA, Professor of Neurology and Pediatrics at the University of Alabama at Birmingham Epilepsy Center, discussed the challenges of IS in an interview with NeurologyLive: https://www.neurologylive.com/view/martina-bebin-md-mpa-challenges-associated-with-infantile-spasms
- A written version of the interview can be found here: https://www.neurologylive.com/view/neurovoices-martina-bebin-md-mpa-on-infantile-spasms-awareness
Dr. Shaun Hussein, MD, MS, Director of the UCLA Infantile Spasms Program, gave an interview with Babygaga on how to identify infantile spasms: https://www.babygaga.com/interview-dr-shaun-hussain-infantile-spasms/
The Callahan family shared their story with the St. Augustine Register, Newsweek and St. Augustine Moms (full links below)
- St. Augustine Register: https://www.staugustine.com/story/news/local/2020/11/26/st-augustine-family-deals-infantile-spasms/6407392002/
- Newsweek: https://www.newsweek.com/my-baby-had-medical-emergency-during-covid-1551428
- St. Augustine Moms: https://staugustine.momcollective.com/health-wellness/my-infant-experienced-a-medical-emergency-during-covid-infantile-spasms/
The Mosco family shared the story of their daughter Hanna’s IS diagnosis in the San Diego Union-Tribune: https://www.sandiegouniontribune.com/opinion/commentary/story/2020-12-07/commentary-dont-avoid-check-ups-or-the-er-becuase-of-coronavirus-our-baby
Finally, the Infantile Spasms Awareness Network created a short video to help parents know the signs on IS: https://youtu.be/kRt8muFfUQo
- A Spanish version is also available for sharing: https://youtu.be/KwnuYOureUw

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

November 24, 2020Episodesclinical research, coronavirus, COVID-19, medical research, natural history database, natural history study, rare disease, TS Alliance, TSC, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complex, vaccinestsc-now

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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:

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).
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).
Make a donation using our #GivingTuesday Page
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

Episode 17: Gene Therapy in TSC

October 31, 2020Episodesclinical trials, coronavirus, COVID-19, gene therapy, medical research, preclinical research, TSC, TSC research, TSCRP, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complextsc-now

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In episode 17 of TSC Now, host Dan Klein talks to Xandra Breakefield, PhD, Professor of Neurology at Harvard Medical School and a geneticist, specializing in neurology & tadiology at Massachusetts General Hospital. Dr. Breakefield’s research focuses on gene therapy in preclinical mouse models of TSC in which the TSC1 or TSC2 gene are missing. By introducing the missing gene into the bloodstream via an adeno-associated virus (AAV) vector, Dr. Breakefield has been able to normalize brain structures and extend the lifespan to almost normal length in mouse models of both TSC1 and TSC2. This research was funded in part by grants through the Tuberous Sclerosis Complex Research Program (TSCRP), demonstrating how funds appropriated because of the tireless advocacy during the March on Capitol Hill has meaningfully advanced TSC research. They discuss how AAV vector technology is already being used in other diseases, what are the potential benefits of gene therapy in TSC over current treatment options, and how to transition from ongoing preclinical trials to future clinical trials.

Resources and Links
Read more about Dr. Breakefield’s Research: https://cdmrp.army.mil/tscrp/research_highlights/19breakefield_highlight
Register now for the final Virtual TSC & LAM Conference and view tracks from the previous two: https://www.tsalliance.org/news/join-us-for-the-2020-virtual-tsc-lam-conference-series/
Visit the Virtual Exhibit Hall: https://www.tsalliance.org/virtual-exhibit-hall/
Learn more about a clinical study for individuals with TSC who contracted COVID-19: https://www.tsalliance.org/tsc-matters/have-you-or-your-loved-one-with-tsc-been-diagnosed-with-covid-19-2/

Episode 16: COVID-19 and Back to School

August 28, 2020EpisodesAmericans with Disabilities Act, autism spectrum disorder, behaviors, coronavirus, COVID-19, educational advocacy, IDEA Act, IEP, IEPs, Individual Education Plans, Individuals with Disabilities Education Act, rare disease, TS Alliance, TSC, tsc-associated neuropsychiatric disorders, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complex, volunteertsc-now

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In episode 16 of TSC Now, host Dan Klein talks to two of the TS Alliance’s Education Parent Mentors to better understand how parents should approach making the decision on sending their kids back to school during the ongoing COVID-19 pandemic and what rights they have to advocate for the services their kids need. This episode is a follow-up to the webinar “COVID-19 and Back to School” led by our education parent mentors earlier this month.

First, Dan talks with Shannon Grandia (01:21), a mother to three kids with TSC and a spouse to an adult with TSC, who volunteers as an Education Parent Mentor, Adult Regional Coordinator and Dependent Adult Transition Resource Coordinator. In addition to her role as a volunteer, Shannon is also a first-grade teacher in California. They discuss the challenges parents and teachers face in California starting the school year virtually, the incredible workload teachers are taking on to provide resources to kids while they are at home to help address regression from the end of the last school year, and how parents and teachers can develop trust through open communication.

Then Dan talks to Shelly Meitzler (26:45), TS Alliance Regional Program Manager East and an Education Parent Mentor in Pennsylvania. They discuss what decisions she made for her family and what was involved in those decisions, how Individualized Education Programs (IEPs) will look different during the pandemic, and the importance of establishing a paper trail when advocating for your child.

If you are dealing with educational issues and need support please reach out to Dena Hook, Vice President of Support Services at dhook@tsalliance.org so that she can connect you to one of our trained and dedicated education parent mentors.

Thank you to everyone who came out for the Step Forward to Cure TSC National Virtual Walk Run Ride and to the generous sponsors who made the event possible:

You can re-watch all the videos from the weekend and support the Walk-Run-Ride by going to stepforwardtocuretsc.org.

Resources and Links
COVID-19 and Back to School Webinar Recording: https://youtu.be/jp7cJF4boYY
TS Alliance web page on school issues: https://www.tsalliance.org/individuals-families/school-issues/
Local resources to help you connect with local Education Parent Mentors: https://www.tsalliance.org/individuals-families/find-local-resources/

Episode 15: Managing Behaviors During COVID-19 (Part 2) + A New Partnership with SeizureTracker

August 1, 2020Episodesaggression, behaviors, coronavirus, COVID-19, epilepsy, medical research, seizures, TAND, TS Alliance, TSC, TSC research, tsc-associated neuropsychiatric disorders, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complextsc-now

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In episode 15 of TSC Now, host Dan Klein continues exploring how to manage harmful and disruptive behaviors associated with TSC-associated neuropsychiatric disorders (TAND) during the ongoing COVID-19 pandemic. Then he explores a new partnership between the TS Alliance and SeizureTracker and how it’s advancing both our understanding of TSC and epilepsy.

First, Dan talks with Tanjala Gipson, MD, Director of the TSC-Associated Neuropsychiatric Disorders Clinic at Le Bonheur Children’s Hospital and Director of the Neurodevelopmental Disabilities Clinic at the Boling Center for Disabilities (01:20). She discusses what factors about the pandemic are causing TAND-related behaviors to be more frequent and severe, how parents can begin to address these behaviors, and what parents should do to manage their own anxiety and prepare for an extended period of time at home during the pandemic. She also answers questions from parents about how to deal with sleeplessness, emotional outbursts, and transitioning from one activity to another. See below for more TAND and COVID-related resources.

Then Dan chats with Rob Moss, creator and co-founder of SeizureTracker.com, and Gabrielle Rushing, PhD, Associate Director of Research at the Tuberous Sclerosis Alliance (24:33). They discuss a new data sharing partnership that will allow SeizureTracker users to connect their seizure data with the TS Alliance Natural History Database, how individuals with TSC can participate in the TSC Biosample Repository Project, and the role patients and patient-reported outcomes play in research and our understanding of TSC and epilepsy. They also talk about how SeizureTracker and the Natural History Database and TSC Biosample Repository are moving research forward and how these tools will continue to evolve in the future. Learn more about how you or your loved one can participate in the TSC Biosample Repository Project.

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/
Managing Anxiety During COVID-19 Webinar Recording: https://www.youtube.com/watch?v=m4rHD0Zhdpc
TS Alliance COVID-19 & TSC Resources: https://www.tsalliance.org/individuals-families/covid-19/
TAND 101: The TAND Checklist Webinar Recording: https://www.youtube.com/watch?v=BXO9MopLg9k&feature=emb_logo

TS Alliance and SeizureTracker Partnership Announcement: https://www.prnewswire.com/news-releases/tuberous-sclerosis-alliance-and-seizure-tracker-partner-to-promote-data-sharing-and-biosample-collection-301079871.html?tc=eml_cleartime
Seizures and Tuberous Sclerosis Complex web page on SeizureTracker.com: https://www.seizuretracker.com/SeizureSuccess/TSC_Tuberous-Sclerosis-Complex/
TSC Biosample Repository and Natural History Database web page: https://www.tsalliance.org/individuals-families/biosample-repository-and-natural-history-database/

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/