Tag Archives: volunteer

Episode 39: Inspiring a World TSC Community

September 2, 2022Episodesadvocacy, clinical research, epilepsy, medical research, patient advocacy, TSC, TSC Alliance, TSC research, tuberous sclerosis, tuberous sclerosis complex, volunteertsc-now

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In a special two-part episode of TSC Now, host Dan Klein recaps the 2022 World TSC Conference, which was held in Dallas, Texas July 28-31, 2022. In part two, Dan explores the history of tuberous sclerosis complex (TSC) conferences and speaks to inspiring leaders who have shaped the TSC Alliance’s past and will continue to shape it’s future.

On Saturday, July 30, 2022, during the Blue Night Dinner at the 2022 World TSC Conference, Dr. Michael and Janie Frost were presented the TSC Champion Award. Michael and Janie Frost have both devoted their careers and lives to helping individuals and their families affected by TSC.

Dr. Frost is a board-certified child neurologist and epileptologist. He was a founding team member of Minnesota Epilepsy Group in 1991 and established the Upper Midwest TSC Clinic Without Walls after meeting Dr. John Hulbert at a TSC Alliance research conference in 2002. During his tenure as Co-Director of the TSC Clinic, he served as an investigator on several pivotal clinical trials including Afinitor, which led to its approval for treating SEGAs in 2010; Epidiolex that led to its approval in 2020; and the current PREVeNT Trial, the first preventative clinical trial for epilepsy in the United States. In 2006, Minnesota Epilepsy Group was one of two pilot sites for the TSC Natural History Database. Additionally, Dr. Frost served on the Clinical Consensus Group in 1998 to help establish the original TSC Clinical Consensus Guidelines and continued this role through two additional revisions with a special expertise in comprehensive and coordinated care. Dr. Frost continues to provide his guidance as a member of the TSC Alliance Professional Advisory Board.

Janie Frost is a trained epilepsy nurse. She served as a member of the TSC Alliance Board of Directors from 2006-2011 and as Secretary in 2009. With her expertise in clinical care, she helped organize the 1999 (Washington, DC) and 2001 (San Diego) National Family Conferences and Chaired the National and World TSC Conferences in 2006 (Chicago), 2014 (Washington, DC) and 2018 (Dallas). These conferences are among the most prolific gatherings of the global TSC community and were successful because of her outstanding leadership and dedication. Janie also generously served on the planning committee for the Minnesota-based Sound Bites events as well as the 35^th, 40^th and 45^th TSC Alliance anniversary galas.

Prior to Blue Night Dan caught up with the Frosts (01:42). They talked about how family conferences have changed since the 1980s, what makes the TSC community and TSC Alliance unique in our ability to advance research and inspire others to join our cause, how they first got involved in TSC research, and what advice they would give to new parents at the start of their TSC journey.

Then, Dan catches up with Preston Fitzgerald (23:23). Preston served as a Future Leader during the 2021-2022 school year and in that role he and his cohort organized webinars and provided support to other young adults with TSC. Preston was attending the World TSC Conference for the first time and shares how strange it is meeting people in person after several years of virtual interaction during the COVID-19 pandemic, what his plans are now that he has graduated from college magna cum laude, and what advice he gives to other young adults living with TSC.

This podcast is sponsored by:

Episode 20: The 2021 Virtual March on Capitol Hill

January 29, 2021Episodes#march4TSCresearch, advocacy, government advocacy, March on Capitol Hill, medical research, patient advocacy, rare disease, TS Alliance, TSC, TSC research, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complex, volunteertsc-now

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

August 16, 2019EpisodesADA, Americans with Disabilities Act, autism, educational advocacy, epilepsy, IDEA Act, IEP, IEPs, Individual Education Plans, Individuals with Disabilities Education Act, special education, TS Alliance, TSC, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complex, volunteertsc-now

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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/