Tag Archives: patient advocacy

Episode 24: Achieving Universal Health Coverage and Driving Innovative Research Through Global Collaboration



It’s the two-year anniversary of TSC Now and we’re celebrating with a new name, the TSC Alliance! If you missed our announcement on May 16, the Tuberous Sclerosis Alliance has changed our name to the TSC Alliance to reflect how the organization has evolved over the years and with the name change we also have a new logo, new branding and a new tagline, “Hope no matter how complex.” Learn more about this evolution.

In recognition of #TSCGlobalDay and TSC Awareness Month, host Dan Klein learns about two global collaborative projects aimed at improving the lives of those living with rare diseases around the world. First, he talks to Matt Bolz-Johnson (02:44), Programme Director of the Collaborative Global Network for Rare Diseases at Rare Diseases International (RDI), who is leading a partnership with the World Health Organization to develop the first Collaborative Global Network for Rare Diseases. RDI envisions a world where people living with a rare disease, no matter where they live, can reach a network of expertise for accurate and timely diagnosis and appropriate care and believe that to strengthen health systems to address the needs of the 300 million people worldwide living with a rare disease requires common strategies and action at the national, regional and global level. The TSC Alliance and the TSC Alliance of India have partnered with RDI to help advance this project and Dan and Matt discuss how advocacy organizations play a vital role in the global network model.

Then, Dan catches up with Professor Petrus de Vries, MBChB, FRCPsych, PhD, Sue Struengmann Professor of Child & Adolescent Psychiatry at the University of Cape Town, South Africa, and Professor Anna Jansen, MD, PhD, Pediatric Neurologist at Universitair Ziekenhuis Brussel, Vrije Universiteit Brussel in Belgium (18:12). Petrus and Anna are Principal and Co-Principal Investigators of the TANDem Project, an international effort to improve the lives of families dealing with TSC-associated neuropsychiatric disorders (TAND) through the development of technology empowering families to self-administer the TAND checklist and access tools to address specific TAND manifestations. They provide an update on the project, what they’ve learned through the first year and a half working with the various clusters, and what the timeline and aims are for the future.

Thank you to everyone who has listened and supported TSC Now over the last two years, we will continue to work hard to provide entertaining and valuable content for families and individuals affected by tuberous sclerosis complex.

Resources and Links


Episode 20: The 2021 Virtual March on Capitol Hill



In the first episode of TSC Now, host Dan Klein dives deep on the upcoming Virtual March on Capitol Hill taking place March 1-5, 2021. Due to the ongoing COVID-19 pandemic, the TS Alliance has decided to protect our volunteers by holding the march virtually. The March on Capitol Hill is the TS Alliance’s annual effort to advocate for continued funding for the Tuberous Sclerosis Complex Research Program (TSCRP) a subset of the Congressionally Directed Medical Research Program at the Department of Defense. Through these efforts $97 million has been allocated for the TSCRP since 2001 and last year our advocates successfully advocated for an increase in the annual appropriation to $8 million. If you are interested in volunteering please send an email to grc@tsalliance.org.

First, Dan spoke with Chip Burkhalter (02:13), a parent and TS Alliance Board Member, who came to the March on Capitol Hill for the first time last year. He shares how he first got involved, and why he believes getting connected and volunteering is so important after getting a TSC diagnosis. They also discuss how the TS Alliance advocates have been able to garner bipartisan support for TSCRP funding even in the most partisan environments.

Next, Dan talks to Kaushal Asrani, MBBS, PhD (16:09), a Research Associate in the Department of Pathology, at the Johns Hopkins University School of Medicine. He talks about his research to understand whether lysosomal biogenesis is a potential driver of tumorigenesis and therapeutic target in tuberous sclerosis, from which initial results will be published later this year. They also discuss how TSCRP funding has been pivotal to his work and how connecting with families at last year’s event provides motivation to continue to discover new therapies.

Finally, Dan catches up with Sara Chieffo (25:30), a parent, TS Alliance Board Member and Chair of the Government Relations Committee. She shares what motivated her to get involved in government advocacy, how our volunteers can be effective virtually this year, and why you should get involved too.

Resources and Links
Learn about the TS Alliance’s Government Advocacy Program: https://www.tsalliance.org/engage/government-advocacy/
Learn more about the TSCRP: https://cdmrp.army.mil/tscrp/default
Read an abstract of Dr. Asrani’s TSCRP-funded project:https://cdmrp.army.mil/search.aspx?LOG_NO=TS180078
Meet Dr. Asrani’s Team at Johns Hopkins: http://labs.pathology.jhu.edu/lotan/our-team/
Learn about what goes into our advocacy efforts by enrolling in TSC Academy, the TS Alliance’s e-learning platform: www.tscacademy.org


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 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 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


Episode 1: TSC Global Day, 45th Anniversary and the Future of TSC Research



Welcome to the debut episode of TSC Now, a podcast from the Tuberous Sclerosis Alliance! In this episode Dan Klein, Director of Digital Platforms, talked to Jennifer Flinn from TS Canada ST, Eva Schoeters from Be-TSC in Belgium, and Rahul Vipparthi from the TS Alliance of India about the challenges they face in their countries, TSC Global Awareness Day and how they are spreading awareness of TSC. He also talked to Kari Luther Rosbeck, President and CEO of the Tuberous Sclerosis Alliance and Chief Scientific Officer Steve Roberds, PhD, about the organization’s 45th anniversary and history, how Unlock the Cure changed the role of the TS Alliance in driving research and what the future holds for TSC research. Finally, Dan talked to Jill Woodworth, host of TSC Talks, about why she started a podcast, what her future plans are for TSC Talks and what she’s learned through the conversations she has had with her guests.

TS Canada ST: https://www.tscanada.ca/

Be-TSC: http://www.betsc.be/

TS Alliance of India: http://tsa-india.org/

To learn more about the Educational Meeting and International TSC Research Conference in Toronto visit: https://www.tsalliance.org/news/the-2019-international-tsc-research-conference-is-june-20-22-in-toronto/

To read about the TANDem Project visit: https://www.tsalliance.org/international-tand-research-project-awarded-funding/

To read the Executive Summary of the Research Business Plan visit: https://www.tsalliance.org/about-us/

To listen to TSC Talks visit: https://www.spreaker.com/show/jill-mccutchan-woodworths-tracks

Send your questions for the Question and Answer episode to tscnow@tsalliance.org.