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Caregiver corner
at age 29 | living with LGS
Hear about other caregivers’ experiences with EPIDIOLEX
Greg Grunberg hosts The Care Giver, a video series where caregivers talk about their experiences
Join actor Greg Grunberg as he travels around the country, sharing the stories of caregivers of families living with Lennox-Gastaut syndrome (LGS), Dravet syndrome, and tuberous sclerosis complex (TSC), and giving them a much-needed day of care. Greg is not only an actor, but he’s also a father of 3 sons—one of whom has epilepsy. So he understands what it means to give your all to a loved one. The Care Giver is a series full of incredible stories of caregivers from diagnosis to starting on EPIDIOLEX that will provide you strength and hope in knowing you’re not alone on this journey.
Meghan, a TSC caregiver
(3 episodes)
Episode 1: No Timeouts for a Full-time Mom
Greg Grunberg heads to Massachusetts to meet Meghan, mom of 3—including her daughter Cammy, who lives with TSC. From doctor’s appointments to working with her community, Meghan’s been going non-stop for the past 4 years. Now, The Care Giver is here to give this busy mom a well-deserved day off.
Meghan, a TSC caregiver
Episode 2: A Match Against Time
In Meghan’s second episode of The Care Giver series, Greg and Meghan sit down to talk about Cammy’s journey and how since starting EPIDIOLEX and having fewer seizures, she’s engaging a bit more and even retaining some skills. Meghan shares how much she loves watching Cammy keep up on the playground with her siblings and friends she’s made at school.
Meghan, a TSC caregiver
Episode 3: It Takes a Village
Meghan’s husband, Mike, has been working with Greg to plan a backyard garden soirée. Because of Cammy’s reduced seizures from EPIDIOLEX, Meghan is able to relax a bit at the party; she doesn’t have to hover over Cammy as much as she used to. As the ice cream man pulls up, Meghan reveals her big takeaway: despite being gone all day, everything is still standing.
Brittany, a Dravet syndrome caregiver
(3 episodes)
Episode 1: The Obstacle Course of Life
Greg saddles up for a trip to Texas to meet Brittany and her son Kasen, who absolutely loves obstacle courses and lives with Dravet syndrome. Brittany opens up to Greg about the real-life obstacles she’s gone through, from the pressure she feels as a single mom, adapting to Kasen’s diagnosis, and finding time for self-care.
Brittany, a Dravet syndrome caregiver
Episode 2: Learning a Latte About Brittany
Greg and Brittany go to a local cafe for iced lattes and the “me” time Brittany’s been dreaming about. Brittany and Greg agree caregivers can never settle. Brittany tells Greg that after 5 different medications, she began an open dialogue with Kasen’s neurologist about EPIDIOLEX.
Brittany, a Dravet syndrome caregiver
Episode 3: Finding Calm in Chaos
Brittany’s day of care comes to an end as Greg surprises her with a mini relaxation retreat in the park. With Greg’s help, Brittany recognizes that she not only needs to take a break, but that it’s okay to take a break. Brittany acknowledges the rough nights and rough days she’s had on her journey, but is hopeful that Kasen’s future looks brighter with EPIDIOLEX.
Jon, an LGS caregiver
(4 episodes)
Episode 1: An Epic Day for an Epic Dad
In this episode, we meet Jon, father to Quinn and Cameron, who is 17 years old and living with LGS. Jon’s wife, Jenn, tells us why Jon is so deserving of a day of care. Next thing they know, Greg knocks on their door and sits down with Jon to talk family, cars, and the unique experience of parenting a child with epilepsy.
Jon, an LGS caregiver
Episode 2: Driving to Diagnosis
Jon and Greg venture out for a dads’ day of care—wait until you see the look on Jon’s face when he sees where they go. They explore the location, then sit down to talk. Jon opens up about Cameron’s diagnosis story, the challenges of living with seizures, and what led them to consider EPIDIOLEX.
Jon, an LGS caregiver
Episode 3: The Winding Road to Treatment
Jon and Greg return from their outing and talk about how Cameron is doing today after being on EPIDIOLEX for a few years. They connect on the importance of “special time” for siblings, and, with reduced seizures, celebrating victories like learning to read, developing friendships, and more.
Jon, an LGS caregiver
Episode 4: Highway to Hope
In the final episode of Jon’s story, we meet Cameron, Quinn, and Jenn as Greg steps into a new role: that of grill master. Greg cooks up some fun with Cam and crew while Jon reflects on the way EPIDIOLEX has shaped his outlook for his family’s future.
Gloria, a Dravet syndrome caregiver
(4 episodes)
Episode 1: Big Plans for a Plant Mom
In this episode, we head to Texas to meet Gloria, mother to Grace, who is 9 years old and living with Dravet syndrome. Gloria introduces us to her husband, Ascension, and their older daughter, Maddy. In this tight-knit family, everybody works together to support Grace. Follow Gloria and Greg as they talk about their respective families and what it means to care for someone with a rare epilepsy disorder. Gloria knows caregivers need support, and today, Greg is here to give her a day of care.
Gloria, a Dravet syndrome caregiver
Episode 2: The Healing Garden
Gloria’s day of care is just beginning to blossom as Greg and Gloria take a trip to a beautiful garden to enjoy a little peace with nature. Greg lends an ear as Gloria shares the challenges and self-doubt she experienced while advocating for Grace, such as the process of finding the right doctor for her family.
Gloria, a Dravet syndrome caregiver
Episode 3: A Toast to Hope
Greg surprises Gloria with an afternoon tea in the garden. Over finger sandwiches and small cakes, Gloria shares more about Grace, who Gloria says is her biggest teacher. Before they head out, Gloria talks about how important a positive mindset is when starting a new treatment, and how a little bit of hope and brightness can go a long way.
Gloria, a Dravet syndrome caregiver
Episode 4: A Flourishing Family
Gloria and Greg return to find Maddy and Ascension waiting for them in their home garden. Gloria opens up about Grace’s progress on EPIDIOLEX and talks about achievements in her development, like kicking a soccer ball across the room. Gloria’s day of care has helped her realize the importance of taking care of herself in order to take care of her family.
Leslie, a TSC caregiver
(4 episodes)
Episode 1: Portrait of a Caregiver
Greg takes a trip to the Pacific Northwest to meet Leslie and her family, including her daughter, Kelley, who is living with TSC. Like many caregivers, Leslie struggles to prioritize her own self care, but Greg is here to help! Listen and learn as Greg and Leslie talk about rare epilepsy, caregiving, and how discussions like this can help others become more comfortable with special needs.
Leslie, a TSC caregiver
Episode 2: The Art of Diagnosis
In this episode, Leslie indulges in her creative side for her day of care with some art therapy. While drawing, they take the time to have a deeper conversation about Kelley and her journey to diagnosis. Though the diagnosis was overwhelming at first, Leslie and her husband learned to manage in the moment instead of going down that slippery slope of “what if?” She and Greg agree, as long as you do what works for you, there is no right way to be a caregiver.
Leslie, a TSC caregiver
Episode 3: The Colors of Hope
Leslie and Greg have moved onto their second art therapy activity: painting their hopes and dreams. Leslie reflects on the big changes for Kelley since she started EPIDIOLEX, like moving into an adult home. Together, Greg and Leslie paint their hopes and dreams—and for Leslie, that takes the form of a sunrise
Leslie, a TSC caregiver
Episode 4: A Big Slice of Support
Leslie’s day of care ends with some delicious homemade pizza for the whole family. Leslie gives Greg a piece of advice for new caregivers: they can’t let their fears prevent them from trying a different medication. As Greg says goodbye, Leslie thinks back on the day, and realizes how important it is for caregivers to stop and take care of themselves, too.
Full playlist
Meghan, a TSC caregiver
(3 episodes)
Episode 1: No Timeouts for a Full-time Mom
Greg Grunberg heads to Massachusetts to meet Meghan, mom of 3—including her daughter Cammy, who lives with TSC. From doctor’s appointments to working with her community, Meghan’s been going non-stop for the past 4 years. Now, The Care Giver is here to give this busy mom a well-deserved day off.
Meghan, a TSC caregiver
Episode 2: A Match Against Time
In Meghan’s second episode of The Care Giver series, Greg and Meghan sit down to talk about Cammy’s journey and how since starting EPIDIOLEX and having fewer seizures, she’s engaging a bit more and even retaining some skills. Meghan shares how much she loves watching Cammy keep up on the playground with her siblings and friends she’s made at school.
Meghan, a TSC caregiver
Episode 3: It Takes a Village
Meghan’s husband, Mike, has been working with Greg to plan a backyard garden soirée. Because of Cammy’s reduced seizures from EPIDIOLEX, Meghan is able to relax a bit at the party; she doesn’t have to hover over Cammy as much as she used to. As the ice cream man pulls up, Meghan reveals her big takeaway: despite being gone all day, everything is still standing.
Brittany, a Dravet syndrome caregiver
(3 episodes)
Episode 1: The Obstacle Course of Life
Greg saddles up for a trip to Texas to meet Brittany and her son Kasen, who absolutely loves obstacle courses and lives with Dravet syndrome. Brittany opens up to Greg about the real-life obstacles she’s gone through, from the pressure she feels as a single mom, adapting to Kasen’s diagnosis, and finding time for self-care.
Brittany, a Dravet syndrome caregiver
Episode 2: Learning a Latte About Brittany
Greg and Brittany go to a local cafe for iced lattes and the “me” time Brittany’s been dreaming about. Brittany and Greg agree caregivers can never settle. Brittany tells Greg that after 5 different medications, she began an open dialogue with Kasen’s neurologist about EPIDIOLEX.
Brittany, a Dravet syndrome caregiver
Episode 3: Finding Calm in Chaos
Brittany’s day of care comes to an end as Greg surprises her with a mini relaxation retreat in the park. With Greg’s help, Brittany recognizes that she not only needs to take a break, but that it’s okay to take a break. Brittany acknowledges the rough nights and rough days she’s had on her journey, but is hopeful that Kasen’s future looks brighter with EPIDIOLEX.
Jon, an LGS caregiver
(4 episodes)
Episode 1: An Epic Day for an Epic Dad
In this episode, we meet Jon, father to Quinn and Cameron, who is 17 years old and living with LGS. Jon’s wife, Jenn, tells us why Jon is so deserving of a day of care. Next thing they know, Greg knocks on their door and sits down with Jon to talk family, cars, and the unique experience of parenting a child with epilepsy.
Jon, an LGS caregiver
Episode 2: Driving to Diagnosis
Jon and Greg venture out for a dads’ day of care—wait until you see the look on Jon’s face when he sees where they go. They explore the location, then sit down to talk. Jon opens up about Cameron’s diagnosis story, the challenges of living with seizures, and what led them to consider EPIDIOLEX.
Jon, an LGS caregiver
Episode 3: The Winding Road to Treatment
Jon and Greg return from their outing and talk about how Cameron is doing today after being on EPIDIOLEX for a few years. They connect on the importance of “special time” for siblings, and, with reduced seizures, celebrating victories like learning to read, developing friendships, and more.
Jon, an LGS caregiver
Episode 4: Highway to Hope
In the final episode of Jon’s story, we meet Cameron, Quinn, and Jenn as Greg steps into a new role: that of grill master. Greg cooks up some fun with Cam and crew while Jon reflects on the way EPIDIOLEX has shaped his outlook for his family’s future.
Gloria, a Dravet syndrome caregiver
(4 episodes)
Episode 1: Big Plans for a Plant Mom
In this episode, we head to Texas to meet Gloria, mother to Grace, who is 9 years old and living with Dravet syndrome. Gloria introduces us to her husband, Ascension, and their older daughter, Maddy. In this tight-knit family, everybody works together to support Grace. Follow Gloria and Greg as they talk about their respective families and what it means to care for someone with a rare epilepsy disorder. Gloria knows caregivers need support, and today, Greg is here to give her a day of care.
Gloria, a Dravet syndrome caregiver
Episode 2: The Healing Garden
Gloria’s day of care is just beginning to blossom as Greg and Gloria take a trip to a beautiful garden to enjoy a little peace with nature. Greg lends an ear as Gloria shares the challenges and self-doubt she experienced while advocating for Grace, such as the process of finding the right doctor for her family.
Gloria, a Dravet syndrome caregiver
Episode 3: A Toast to Hope
Greg surprises Gloria with an afternoon tea in the garden. Over finger sandwiches and small cakes, Gloria shares more about Grace, who Gloria says is her biggest teacher. Before they head out, Gloria talks about how important a positive mindset is when starting a new treatment, and how a little bit of hope and brightness can go a long way.
Gloria, a Dravet syndrome caregiver
Episode 4: A Flourishing Family
Gloria and Greg return to find Maddy and Ascension waiting for them in their home garden. Gloria opens up about Grace’s progress on EPIDIOLEX and talks about achievements in her development, like kicking a soccer ball across the room. Gloria’s day of care has helped her realize the importance of taking care of herself in order to take care of her family.
Leslie, a TSC caregiver
(4 episodes)
Episode 1: Portrait of a Caregiver
Greg takes a trip to the Pacific Northwest to meet Leslie and her family, including her daughter, Kelley, who is living with TSC. Like many caregivers, Leslie struggles to prioritize her own self care, but Greg is here to help! Listen and learn as Greg and Leslie talk about rare epilepsy, caregiving, and how discussions like this can help others become more comfortable with special needs.
Leslie, a TSC caregiver
Episode 2: The Art of Diagnosis
In this episode, Leslie indulges in her creative side for her day of care with some art therapy. While drawing, they take the time to have a deeper conversation about Kelley and her journey to diagnosis. Though the diagnosis was overwhelming at first, Leslie and her husband learned to manage in the moment instead of going down that slippery slope of “what if?” She and Greg agree, as long as you do what works for you, there is no right way to be a caregiver.
Leslie, a TSC caregiver
Episode 3: The Colors of Hope
Leslie and Greg have moved onto their second art therapy activity: painting their hopes and dreams. Leslie reflects on the big changes for Kelley since she started EPIDIOLEX, like moving into an adult home. Together, Greg and Leslie paint their hopes and dreams—and for Leslie, that takes the form of a sunrise
Leslie, a TSC caregiver
Episode 4: A Big Slice of Support
Leslie’s day of care ends with some delicious homemade pizza for the whole family. Leslie gives Greg a piece of advice for new caregivers: they can’t let their fears prevent them from trying a different medication. As Greg says goodbye, Leslie thinks back on the day, and realizes how important it is for caregivers to stop and take care of themselves, too.
Learn about advocacy groups
There are many organizations that provide condition-related educational information, support, and useful tools for the community. Visit the sites of these key organizations to learn more.
A caregiver's advice when considering changing treatment
Considering changing your loved one's treatment? Carmen's been there too. And now she's here for you. Find out how she advocated for her son, Corey, and how you can do the same for your loved one.
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