The Invisible Wave Podcast

For all there is to say about the incoming presidential administration, and there's plenty, one thing that surprised us was to see chronic illness mentioned front and center in all the Health picks. Santi enlists Dr. Kavita Patel, Obama admin veteran, DC insider and MSNBC contributor, to make sense of it all, and help gauge if there's any cause for optimism for the IW movement.

To get involved and donate, visit:

https://invisiblewave.org/donate

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.

Father and son doctors Hank and Reid Chambers take us through the experience of being father and sibling to a young person with cerebral palsy, and how that lived experience, and their perspective as men in their families, has informed their relationships with each other and with the families of their patients. And in keeping with our grass-roots solutions theme, Hank shares how his experience as a father and doctor also inspired him to create a clinic model at his hospital in San Diego that we feel is a gold standard for care for this population and their families.

To get involved and donate, visit:

https://invisiblewave.org/donate

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.

Building on our higher ed theme, the Invisible Wave Ambassadors join Santi to illuminate the unique unseen challenges they have personally faced in college and grad school, causing them to struggle, fall behind, and even drop out. And they share simple, attainable ideas for the kinds of support that would have made all the difference for them, and the millions like them, which we need to implement nationwide to stop the hemorrhage of talent from our schools.

To get involved and donate, visit:

https://invisiblewave.org/donate

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.

Parents of young adults with chronic health conditions are presented with a unique dilemma - how to let go of their protective instincts and encourage autonomy and independence in their children as they move into adulthood, when faced with serious, even life-threatening health care realities. Santi sits down with renowned pediatric psychologist and family systems expert Rudy Bauer on steps parents and their children can take to better understand and navigate these profound and rarely discussed dynamics.

To get involved and donate, visit:

https://invisiblewave.org/donate

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.

Guests Wendy and Miller Steel take us through the experience of being parents to a young adult with a chronic condition, with themes that will be familiar to listeners of the Invisible Wave Podcast - years of misdiagnosis, gaslighting, suffering and sacrifice - but also with some bright notes on the power of a few well chosen words from a trusted ally, and of listening.

To learn more, visit:

https://www.youngadultswithepilepsy.org/peer-support-group

https://www.youngadultswithepilepsy.org/carpeseizenpodcast

To get involved and donate, visit:

https://invisiblewave.org/donate

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.

One year into his ROTC program, Guest Nick Ruffini was stamped undeployable due to a Crohn's disease diagnosis. Despite a specialist's assurances that Nick would be able to complete his training and serve with the right treatment, he was told his dream of a life of service was over, and his education, employment and long term life plans were all thrown out the window. Nick discusses the confusion and abandonment he felt as he was simply cast aside without any guidace on what he was supposed to do next, and illustrates for us the great cost in talent of letting these young people slip through the cracks.

To get involved and donate, visit:

https://invisiblewave.org/donate

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.

MD State Senator Brian Feldman and Delegate Joseline Peña-Melnyk give us their thoughts on Margot Schinella’s groundbreaking model at Vassar and how it might serve as the basis for legislation at the Maryland State level. They take us behind the legislative curtain and drive home how activism is really what moves things forward at the government level, giving us a concrete ask that all of us can push for to help this overlooked population thrive and graduate from college - case managers on college campuses nationwide.

To get involved and donate, visit:

https://invisiblewave.org/donate

Resources -

MD State Bill on support for college students with chronic conditions - https://mgaleg.maryland.gov/mgawebsite/Legislation/Details/SB0832?ys=2022RS

MD Report on support for college students with chronic conditions - https://dlslibrary.state.md.us/publications/JCR/2021/2021_197b.pdf

Washington Post Article on national state of support for college students with chronic conditions - https://www.washingtonpost.com/investigations/2020/07/13/college-health-centers-problems/

Task Force on Higher Education Students With Chronic Health Conditions - https://mgaleg.maryland.gov/2021RS/fnotes/bil_0009/hb0059.pdf

Fiscal Note - Public Institutions of Higher Education – Students With Chronic Health Conditions – Case Manager - https://mgaleg.maryland.gov/2022RS/fnotes/bil_0002/sb0832.pdf

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.

In part 1 of our 2-part series on the crucial topic of support for this population on college campuses, we are pleased to welcome Margot Schinella, head of a groundbreaking support system at Vassar College that could serve as a model for campuses nationwide.

To get involved and donate, visit:

https://invisiblewave.org/donate

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.

SELF-Diagnosed with MS at 13, Trisha was told she couldn't row crew anymore, was likely going to be in a wheelchair, and was going to relegated to the sidelines of her life. She now holds several jobs in public health analysis, DID row crew through high school, was on the power weight lifting team in college, and continues to lift to this day.Trisha and Santi talk not only about the ways the medical system frequently fails young adults in diagnosis, but also in the way broader society fails them when it tells them all the things they can't do - sports they can't play, hobbies they need to abandon, activities with friends they will have to give up -- often without any real basis in fact, and with predictable mental health ramifications.

To get involved and donate, visit:

https://invisiblewave.org/donate

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.

James Richardson grew up with cystic fibrosis, a serious condition affecting the lungs, and was not expected to live past 19. Like many young men, sharing something that might make him seen as other, or as somehow less-than or weak, was difficult. So he navigated all the stress and daily existential challenges of this brutal disease alone and in secret for his first 26 years. James eventually summoned the courage to be open about his disease, and in this episode he takes us through that crucial step on his journey to finding all-important community, and how life with a chronic condition, contrary to what those still living in the shadows out of fear of being seen as somehow weak or less-than, actually exemplifies strength.

To get involved and donate, visit:

https://invisiblewave.org/donate

The Invisible Wave Podcast is a non-profit public service produced by TenTen Audio and released in association with Signal Co. No1. Our theme song is “Conqueror” by Blake x Maile.