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Shining a Spotlight on Epilepsy

Renee speaks with filmmaker Tiffany Webb, whose latest documentary, Voice of the Epilepsies airing on KET, chronicles the story of a young girl living with epilepsy and her family's determination to treat the seizure disorder. Webb also discusses her own experience of being diagnosed with epilepsy.
Season 13 Episode 35 Length 28:02 Premiere: 06/29/18

Shining a Spotlight on Epilepsy

Savannah Salazar was a feisty, energetic toddler until she was about two-and-a-half years old. Then, for reasons her parents and doctors still don’t understand, she began having seizures.

At first it was just a few episodes a day. Then there were dozens each day – jerking seizures, staring seizures, fall-to-the ground seizures – at all hours of the day and night.

“I have been watching Savannah seize for 15 years, and nobody should have to watch that,” says her mother, Tracy Dixon-Salazar. “Nobody should have to watch their kid have one seizure, let alone 27,000 seizures, and I count them because that’s all I can really do.”

That full-of-life toddler is now a 25-year-old woman who needs multiple medications and constant care from her family to protect her health and safety. Their story is told in a new documentary produced by Tiffany Webb, a Washington County native and Lexington filmmaker. Webb appeared on KET’s Connections to discuss her documentary and her own battle with epilepsy.

Living with an ‘Invisible Condition’
Webb was seven years old when she began having mild seizures that she describes as staring spells where she briefly loses consciousness. It would be another five years before doctors finally confirmed a diagnosis of epilepsy.

Even with medication, Webb says she still doesn’t have control over her seizures, which can happen multiple times a day, or disappear completely for months at a time. She calls her epilepsy an “invisible condition.”

“People don’t see how you have to restructure your entire life,” Webb says. “I don’t drive to this day… I have to schedule things in advance. I have to prioritize my health and wellbeing.”

Her own journey with the disorder inspired her to make a film that could help raise awareness about epilepsy as well as the challenges faced by families living with the condition and researchers trying to find a cure for it.

The documentary is called “Voice of the Epilepsies.” That’s because epilepsy isn’t just a single condition; it comes in thousands of forms that range from mild to severe. But they all are marked by sudden, recurring, and unpredictable episodes caused by an electrical abnormality in the brain that affect a person’s alertness, motor functions, or bodily sensations.

Webb and her then-husband spent five years following the day-to-day struggles of Savannah Salazar as she navigated family life, school, and doctors appointments. In home video clips, viewers see Savannah change from a boisterous child to a teenaged girl who must wear a helmet to protect her head from uncontrollable bouts of jerking, twitching, and seizing. Along the way, her parents, Tracy and Ruben, and her older brother keep a watchful, loving eye on her.

“I mostly just feel like we’re trying to keep Savannah alive and uninjured,” Tracy says in the film.

The Search for Multiple Cures
Some 65 million people worldwide have some form of epilepsy. In fact, the odds are about one in 10 that a person will have at least one seizure during their lifetime, according to Dr. Jerome Engel of the Seizure Disorder Center at UCLA Health Systems, who appears in “Voice of the Epilepsies.” But he says only a third of those who do have a seizure actually go on to develop some form of epilepsy.

Treatments range from medications and surgery, to dietary changes and electrical nerve stimulation. Engel says drugs can control seizures in about 60 percent of patients, while the remainder may be faced with a lifetime disability.

“There’s so many different types of epilepsy that there are going to be cures when we find them – it’s not going to be one answer, which just makes it more challenging to do,” says Susan Axelrod, founding chair of Citizens United for Research in Epilepsy, in a clip from Webb’s film. “We prefer to look at it as great opportunities and we think that understanding epilepsy is going to be a window into understanding all sorts of other brain disorders.”

After three years of seizing, Savannah Salazar was diagnosed with a severe form of childhood epilepsy known as Lennox-Gastaut syndrome. It results in a range of seizure types as well as intellectual disability. She is not a candidate for surgery because her seizures originate from too many locations in her brain. But the family has had some successes with medications and dietary treatments.

“I have a love/hate relationship with medications because I know they are a lot of the reason that she has so many problems walking and talking,” Tracy says. “But she would not be alive today without medication.”

Even with these treatments, Savannah’s prognosis is not good. Tracy says her daughter has been near death four times with episodes of continuous seizures. Ruben Salazar recalls finding his daughter unresponsive at home. He performed CPR, and with each pump of her chest, he thought to himself that he was not ready to let her go. Both parents live with the fact that their daughter is not expected to survive to her 30th birthday.

“That scares me – I know it’s coming,” Ruben says. “You’ve got other [parents] talking about cheerleading camp and softball, we’re talking about trying to plan our daughter’s death.”

Finding the Silver Linings
Instead of living in a constant state of fear and frustration, Tracy took matters in her own hands. The stay-at-home mom went back to school to improve her English skills so she could better understand the medical information she amassed about Savannah’s condition.

Then she decided to take some science classes, which she discovered she loved. That led her to obtain an associate’s degree, then a bachelor’s degree, and finally move on to graduate studies.

“Somewhere, I think maybe in the first or second year of grad school, I decided that I loved science enough and I disliked epilepsy enough to marry the two,” says Tracy. “I wanted to do epilepsy research.”

Now Tracy has her Ph.D. and she serves as director of research and strategy for the Lennox-Gastaut Syndrome Foundation, a non-profit organization that raises funds to support people living with the condition and to fund research.

“It’s not just about creating a medication that’s going to have less side effects or creating a medication that’s going to cut her seizures down by 30 percent,” she says. “It’s about finding a cure for this horrible, horrible disorder.”

Despite the daily challenges, the Salazars say they still find great joy in their lives with Savannah.

“She’s just so full of love and she’s just somebody you want to be around,” says her brother, Talon.

That positive attitude is crucial, says filmmaker Tiffany Webb.

“You can find silver linings in everything. You can find strength in trials… You always can take a bad thing and help someone else,” Webb says. “There’s freedom in accepting yourself or accepting what you have or what you’re going through.”

While Webb is expected to have a full life, she is haunted by the fact that 50,000 people die each year from seizures. She says that drives her to continue to use her storytelling talents to raise awareness about epilepsy.

“I just don’t want those people to die year after year,” Webb says. “So it’s tough sometimes, and I just keep it in mind that I’m plugging away and I’m doing what I can, and that’s all that matters.”

“Voice of the Epilepsies” airs on KET-KY. throughout July and August. The documentary is also available to rent or purchase on Vimeo. Webb says she is donating a portion of the proceeds of video streaming and sales to epilepsy research.

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Season 13 Episodes

Marcie Timmerman - Mental Health and Wellness

S13 E43 Length 28:03 Premiere Date 08/24/18

Tiffany Manuel - Affordable Housing

S13 E42 Length 27:32 Premiere Date 08/17/18

Jessica Dueñas - 2019 Kentucky Teacher of the Year

S13 E41 Length 28:52 Premiere Date 08/10/18

2018 KIDS COUNT Data Book

S13 E37 Length 28:48 Premiere Date 07/13/18

A New Task Force on Opioids

S13 E36 Length 28:07 Premiere Date 07/06/18

Shining a Spotlight on Epilepsy

S13 E35 Length 28:02 Premiere Date 06/29/18

Criminal Justice Reform

S13 E34 Length 28:32 Premiere Date 06/22/18

Jay Box - Kentucky Community and Technical College

S13 E33 Length 28:03 Premiere Date 06/15/18

Interim Kentucky Education Commissioner Wayne Lewis

S13 E32 Length 28:03 Premiere Date 06/08/18

Bob King - Kentucky Council on Postsecondary Education

S13 E31 Length 28:09 Premiere Date 06/01/18

Rachel Childress - Lexington Habitat for Humanity

S13 E30 Length 26:22 Premiere Date 05/25/18

2018 Kentucky Primary Races

S13 E29 Length 29:52 Premiere Date 05/18/18

Dr. Donna Grigsby

S13 E28 Length 28:03 Premiere Date 05/11/18

Sexual Assault Awareness and Prevention

S13 E27 Length 28:02 Premiere Date 05/04/18

Kosair Charities Face It Movement; Terry Brooks

S13 E25 Length 28:27 Premiere Date 04/20/18

Child Marriage Laws in Kentucky - Donna Pollard

S13 E24 Length 28:42 Premiere Date 04/13/18

Remembering Dr. Martin Luther King, Jr.

S13 E23 Length 29:22 Premiere Date 04/06/18

Secretary Derrick Ramsey - Apprenticeships

S13 E22 Length 28:09 Premiere Date 02/23/18

Educational Innovation

S13 E21 Length 28:45 Premiere Date 02/16/18

Gerald Smith

S13 E20 Length 28:12 Premiere Date 02/09/18

Perry Bacon Jr.

S13 E18 Length 28:02 Premiere Date 02/02/18

DV8 Kitchen

S13 E17 Length 28:37 Premiere Date 01/19/18

Silas House, New Novel

S13 E16 Length 28:03 Premiere Date 01/16/18

Tawanda Owsley

S13 E15 Length 26:32 Premiere Date 01/05/18

Sexual Harassment Issues

S13 E14 Length 28:37 Premiere Date 12/15/17

Disability Rates and Benefits

S13 E13 Length 27:27 Premiere Date 12/08/17

Good Samaritans

S13 E12 Length 28:42 Premiere Date 11/17/17

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S13 E10 Length 26:18 Premiere Date 11/10/17

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S13 E9 Length 28:12 Premiere Date 11/03/17

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S13 E8 Length 29:31 Premiere Date 10/27/17

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S13 E7 Length 28:17 Premiere Date 10/20/17

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S13 E6 Length 28:02 Premiere Date 10/13/17

Rethinking Pain Medication

S13 E5 Length 28:02 Premiere Date 10/06/17

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S13 E4 Length 28:53 Premiere Date 09/29/17

Secretary Elaine Chao

S13 E3 Length 28:52 Premiere Date 09/22/17

Smoking Cessation and Pregnancy

S13 E2 Length 29:32 Premiere Date 09/08/17

Author and Journalist Sam Quinones

S13 E1 Length 28:52 Premiere Date 09/01/17

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Preview Length 28:52 Premiere Date 09/01/17

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Educational Innovation

Premiered On: 02/16/2018

Educational innovation in the mountains is leading to a teaching and learning renaissance in southeast Kentucky. Renee and her guests, Dr. Dessie Bowling, associate director of the Kentucky Valley Educational Cooperative and Rose Shields, rural project manager for the Center for Excellence in Rural Health at the University of Kentucky, discuss recent innovative education practices in the region.

  • Monday January 2, 2023 5:30 am ET on KETKY
  • Monday January 2, 2023 4:30 am CT on KETKY
  • Monday January 2, 2023 2:00 pm ET on KETKY
  • Monday January 2, 2023 1:00 pm CT on KETKY
  • Monday January 2, 2023 10:30 pm ET on KETKY
  • Monday January 2, 2023 9:30 pm CT on KETKY

Remembering Dr. Martin Luther King, Jr.

Premiered On: 04/06/2018

"Connections" remembers Dr. Martin Luther King, Jr. on the 50th anniversary of his assassination. Renee speaks with organizers of a commemorative event in Frankfort and shares highlights from speeches at the MLK Memorial March to Move.

  • Tuesday January 3, 2023 5:30 am ET on KETKY
  • Tuesday January 3, 2023 4:30 am CT on KETKY
  • Tuesday January 3, 2023 2:00 pm ET on KETKY
  • Tuesday January 3, 2023 1:00 pm CT on KETKY
  • Tuesday January 3, 2023 10:30 pm ET on KETKY
  • Tuesday January 3, 2023 9:30 pm CT on KETKY

Child Marriage Laws in Kentucky - Donna Pollard

Premiered On: 04/13/2018

Renee speaks with Donna Pollard, a child marriage survivor and founder of Survivors' Corner, who has become the ambassador for changing child marriage laws in Kentucky with the passage of Senate Bill 48 that was signed into law by Gov. Matt Bevin on March 29, 2018. SB 48 raises the legal age to marry to 18 in Kentucky with some exceptions.

  • Wednesday January 4, 2023 5:30 am ET on KETKY
  • Wednesday January 4, 2023 4:30 am CT on KETKY
  • Wednesday January 4, 2023 2:00 pm ET on KETKY
  • Wednesday January 4, 2023 1:00 pm CT on KETKY
  • Wednesday January 4, 2023 10:30 pm ET on KETKY
  • Wednesday January 4, 2023 9:30 pm CT on KETKY

Kosair Charities Face It Movement; Terry Brooks

Premiered On: 04/20/2018

In part one, Renee speaks with Keith Inman with Kosair Charities and Dr. Jennifer Green, University of Louisville Child Abuse Pediatrics Fellow about Kosair Charities Face It Movement that provides resources for parents and caregivers on child abuse. In part two, Dr. Terry Brooks, executive director of Kentucky Youth Advocates, talks about legislation passed in the 2018 Kentucky General Assembly that benefits children and families.

  • Thursday January 5, 2023 5:30 am ET on KETKY
  • Thursday January 5, 2023 4:30 am CT on KETKY
  • Thursday January 5, 2023 2:00 pm ET on KETKY
  • Thursday January 5, 2023 1:00 pm CT on KETKY
  • Thursday January 5, 2023 10:30 pm ET on KETKY
  • Thursday January 5, 2023 9:30 pm CT on KETKY

Dr. Donna Grigsby

Premiered On: 05/11/2018

Renee speaks with Lexington pediatrician Dr. Donna Grigsby about early childhood brain development and the impact of adverse childhood experiences on cognitive and physical health. Dr. Grigsby discusses how to develop literacy skills in young children.

  • Friday January 6, 2023 5:30 am ET on KETKY
  • Friday January 6, 2023 4:30 am CT on KETKY
  • Friday January 6, 2023 2:00 pm ET on KETKY
  • Friday January 6, 2023 1:00 pm CT on KETKY
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Cory Jewell Jensen - S12 E18

  • Monday December 5, 2022 2:00 pm ET on KETKY
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Restaurateur and Chef Ouita Michel - S16 E31

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David Thompson - S12 E11

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Mitzi Sinnott - S12 E3

  • Thursday December 1, 2022 10:30 pm ET on KETKY
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FDA Commissioner Dr. Robert Califf - S12 E2

  • Wednesday November 30, 2022 10:30 pm ET on KETKY
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Phil Wilkins - S11 E43

  • Tuesday November 29, 2022 10:30 pm ET on KETKY
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Tameka Montgomery - S11 E42

  • Monday November 28, 2022 10:30 pm ET on KETKY
  • Monday November 28, 2022 9:30 pm CT on KETKY
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Dayna Seelig - S15 E12

  • Sunday December 4, 2022 8:00 am ET on KETKY
  • Sunday December 4, 2022 7:00 am CT on KETKY
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  • Sunday November 27, 2022 4:30 pm ET on KETKY
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Dominique Wilkins - S11 E41

  • Friday November 25, 2022 10:30 pm ET on KETKY
  • Friday November 25, 2022 9:30 pm CT on KETKY
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UK President Eli Capilouto - S18 E6

  • Thursday November 24, 2022 11:30 pm ET on KET
  • Thursday November 24, 2022 10:30 pm CT on KET
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  • Thursday November 24, 2022 6:30 pm ET on KET
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Gary Tuggle - S11 E40

  • Thursday November 24, 2022 10:30 pm ET on KETKY
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Dr. Leana Wen - S11 E39

  • Wednesday November 23, 2022 10:29 pm ET on KETKY
  • Wednesday November 23, 2022 9:29 pm CT on KETKY
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  • Wednesday November 23, 2022 5:30 am ET on KETKY
  • Wednesday November 23, 2022 4:30 am CT on KETKY

Terrence Walton - S11 E38

  • Tuesday November 22, 2022 10:30 pm ET on KETKY
  • Tuesday November 22, 2022 9:30 pm CT on KETKY
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  • Tuesday November 22, 2022 5:30 am ET on KETKY
  • Tuesday November 22, 2022 4:30 am CT on KETKY

U.S. Agriculture Secretary Tom Vilsack - S11 E37

  • Monday November 21, 2022 10:30 pm ET on KETKY
  • Monday November 21, 2022 9:30 pm CT on KETKY
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Author Emily Bingham - S18 E11

  • Sunday November 27, 2022 8:00 am ET on KETKY
  • Sunday November 27, 2022 7:00 am CT on KETKY
  • Saturday November 26, 2022 4:30 pm ET on KETKY
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  • Sunday November 20, 2022 12:00 pm ET on KET
  • Sunday November 20, 2022 11:00 am CT on KET

Kimberly Johnson - S11 E36

  • Friday November 18, 2022 10:30 pm ET on KETKY
  • Friday November 18, 2022 9:30 pm CT on KETKY
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Jason Merrick - S11 E35

  • Thursday November 17, 2022 10:30 pm ET on KETKY
  • Thursday November 17, 2022 9:30 pm CT on KETKY
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Fayette County Veterans Treatment Court - S11 E34

  • Wednesday November 16, 2022 10:30 pm ET on KETKY
  • Wednesday November 16, 2022 9:30 pm CT on KETKY
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  • Wednesday November 16, 2022 5:30 am ET on KETKY
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Dr. Lynne Saddler - S11 E33

  • Tuesday November 15, 2022 10:30 pm ET on KETKY
  • Tuesday November 15, 2022 9:30 pm CT on KETKY
  • Tuesday November 15, 2022 2:25 pm ET on KETKY
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  • Tuesday November 15, 2022 4:30 am CT on KETKY

Scott Hesseltine - S11 E32

  • Monday November 14, 2022 10:30 pm ET on KETKY
  • Monday November 14, 2022 9:30 pm CT on KETKY
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Bill Goodman - Kentucky Humanities - S18 E10

  • Sunday November 20, 2022 8:00 am ET on KETKY
  • Sunday November 20, 2022 7:00 am CT on KETKY
  • Saturday November 19, 2022 4:30 pm ET on KETKY
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  • Sunday November 13, 2022 6:00 pm ET on KET2
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  • Sunday November 13, 2022 11:00 am CT on KET

Jessie Laine Powell - S11 E31

  • Friday November 11, 2022 5:30 am ET on KETKY
  • Friday November 11, 2022 4:30 am CT on KETKY

Oral Health Care In Kentucky - S11 E30

  • Thursday November 10, 2022 10:30 pm ET on KETKY
  • Thursday November 10, 2022 9:30 pm CT on KETKY
  • Thursday November 10, 2022 5:30 am ET on KETKY
  • Thursday November 10, 2022 4:30 am CT on KETKY

Kishonna Gray - S11 E29

  • Wednesday November 9, 2022 10:30 pm ET on KETKY
  • Wednesday November 9, 2022 9:30 pm CT on KETKY
  • Wednesday November 9, 2022 5:30 am ET on KETKY
  • Wednesday November 9, 2022 4:30 am CT on KETKY

Gretchen Hunt - S11 E28

  • Tuesday November 8, 2022 10:30 pm ET on KETKY
  • Tuesday November 8, 2022 9:30 pm CT on KETKY
  • Tuesday November 8, 2022 2:00 pm ET on KETKY
  • Tuesday November 8, 2022 1:00 pm CT on KETKY
  • Tuesday November 8, 2022 5:30 am ET on KETKY
  • Tuesday November 8, 2022 4:30 am CT on KETKY

Dr. Erin Frazier - S11 E27

  • Monday November 7, 2022 10:30 pm ET on KETKY
  • Monday November 7, 2022 9:30 pm CT on KETKY
  • Monday November 7, 2022 2:00 pm ET on KETKY
  • Monday November 7, 2022 1:00 pm CT on KETKY
  • Monday November 7, 2022 5:30 am ET on KETKY
  • Monday November 7, 2022 4:30 am CT on KETKY

Restoring American Democracy - S18 E9

  • Friday November 25, 2022 11:00 pm ET on KET2
  • Friday November 25, 2022 10:00 pm CT on KET2
  • Friday November 25, 2022 10:00 pm ET on KETKY
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  • Friday November 25, 2022 6:30 pm ET on KET
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  • Sunday November 13, 2022 8:00 am ET on KETKY
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  • Saturday November 12, 2022 4:30 pm ET on KETKY
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  • Sunday November 6, 2022 6:00 pm ET on KET2
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  • Sunday November 6, 2022 3:30 pm CT on KETKY
  • Sunday November 6, 2022 12:00 pm ET on KET
  • Sunday November 6, 2022 11:00 am CT on KET

Breast Cancer - S18 E8

  • Sunday November 6, 2022 8:00 am ET on KETKY
  • Sunday November 6, 2022 7:00 am CT on KETKY
  • Saturday November 5, 2022 4:30 pm ET on KETKY
  • Saturday November 5, 2022 3:30 pm CT on KETKY

Crystal Wilkinson - S11 E26

  • Friday November 4, 2022 10:30 pm ET on KETKY
  • Friday November 4, 2022 9:30 pm CT on KETKY
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  • Friday November 4, 2022 5:30 am ET on KETKY
  • Friday November 4, 2022 4:30 am CT on KETKY

Criminal Justice Reform - Cherise Fanno Burdeen - S13 E34

  • Thursday November 3, 2022 10:30 pm ET on KETKY
  • Thursday November 3, 2022 9:30 pm CT on KETKY
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