Tag Archives: epilepsy

Episode 10: Expanding Coverage and Ensuring Access to Medications



In episode 10 of TSC Now, host Dan Klein talks to Darcy Krueger, MD, PhD, TSC Clinic Director at Cincinnati Children’s Hospital. They discuss the recent FDA approval of the Sabril label expansion, the study he led that served as supplemental material for that application, and what this process can teach us about the role of physicians, patients and advocacy organizations play in ensuring access to life-saving medications for people with rare diseases like TSC. Finally, they discuss how the TS Alliance can begin to develop evidence-based standards of care.

Then in a brand new segment, Dan catches up with Shelly Meitzler, TS Alliance Regional Program Manager East. They talk about how she first got involved with the TS Alliance, how she draws strength from supporting other families and individuals affected, and why she is running the 2020 TCS New York City Marathon with Team TSC. The TS Alliance has nine spots available for people interested in running the marathon and fundraising with Team TSC, to learn more and apply visit: https://www.tsalliance.org/Team-TSC/ or email Shelly at smeitzler@tsalliance.org.


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 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