Epilepsy Voices

For our season finale, Derrick shares his inspiring and magnificent story as a person living with epilepsy riding the Wave of Life. We are incredibly thankful to Derrick and all of our guests who beautifully shared their stories, and so grateful to our podcast community for building this important platform. Thank you, as always, for listening and igniting hope for all people affected by epilepsy.

Emily shares her inspiring and moving journey of lifelong learning as a person living with epilepsy. She guides us through her story of being diagnosed with epilepsy at 16 and how it has informed her passion for public health and research. Hear about how Emily’s own experiences inspire her to be a leader and advocate for other youth living with epilepsy, providing critical and support care to teens in transition. In this journey, she recognizes that it is because of, not in spite of, her epilepsy that she is an accomplished researcher and public health expert, and that her experiences critically drive her work to ensure that high-quality care and support networks are accessible and equitable to all. EFNE Programming Segment: Massachusetts Walk to Make Epilepsy History, May 1, 2021 (https://epilepsynewengland.org/events/2021-ma-walk) MA Resource Share: Fenway Health (fenwayhealth.org) NH Resource Share: Dartmouth-Hitchcock Educational Conference, April 10, 2021 (http://go.d-h.org/EpilepsyEducation)

(Part 2)This is the story of an incredible life, magnificent love, loss, and hope. Zsatara Savard was just 31 years old when she passed away due to Sudden Unexpected Death in Epilepsy (SUDEP.) In this two-part series, we celebrate and honor the life of Zsatara, as told by her fiancé, Geoff. Geoff shares with us Zsatara’s incredible gifts and passions in life, from hairstyling to motherhood, and the life that he and Zsatara built together. In the aftermath of her passing, he shares with us how he and their 4 year old son Nathanael coped with the loss, how Geoff honors Zsatara by being an advocate for epilepsy, how he keeps her memory thriving, and finally, how their story reminds us all, ‘There iZ Hope’. This series is dedicated to the life and legacy of Zsatara Savard.

This is the story of an incredible life, magnificent love, loss, and hope. Zsatara Savard was just 31 years old when she passed away due to Sudden Unexpected Death in Epilepsy (SUDEP.) In this two-part series, we celebrate and honor the life of Zsatara, as told by her fiancé, Geoff. Geoff shares with us Zsatara’s incredible gifts and passions in life, from hairstyling to motherhood, and the life that he and Zsatara built together. In the aftermath of her passing, he shares with us how he and their 4 year old son Nathanael coped with the loss, how Geoff honors Zsatara by being an advocate for epilepsy, how he keeps her memory thriving, and finally, how their story reminds us all, ‘There iZ Hope’. This series is dedicated to the life and legacy of Zsatara Savard.

Nazeeh is a young man from Niha, Lebanon living with epilepsy, and an inspirational advocate to many. A talented writer, orator, life coach, and leader, Nazeeh titled this episode, “Never Give Up”, as a testament to his resiliency as he faced the obstacles of stigma and discrimination that many living with epilepsy experience. Nazeeh wants to share the message to people living with epilepsy that they can accomplish their dreams, and have important and valuable gifts and talents that leave indelible impacts on the world. Segment Timestamps: Epilepsy Foundation New England Programming Segment (25:33-26:05): Hope the Lion New Hampshire Resource Share (26:15-28:00): Little Angels Service Dogs (littleangelsservicedogs.org) Massachusetts Resource Share (28:12-29:42): Diggity Dogs Service Dogs (indogswetrust.org) Positive News (29:53-30:29): Nazeeh’s Positive News

Veronica is a young woman living with Epilepsy and visual impairment. She has chosen to share her experiences with others to give them hope and remind them to never give up. She explains that music has helped her through dark times and has inspired her to keep fighting. Listen now to hear her story. Segment Timestamps Epilepsy Foundation New England Programming Segment (18:15 – 18:45): Kids Connect Program Massachusetts Resource Share (19:01 – 19:54): Be My Eyes (bemyeyes.com) New Hampshire Resource Share (20:08 – 21:57): 211 New Hampshire (211nh.org) Positive News (22:14-22:34): Veronica’s Positive News

Meg is a young adult living with epilepsy. Listen to her story.

Meet Shane. Listen to his journey of living with epilepsy while navigating school and life. Please note this episode contains information pertaining to bullying, alcohol usage, and suicidal thoughts. Follow the time-stamp below to skip these parts: • 10:25 – 12:30 (bullying) • 15:15 – 16:50 (use of alcohol as a coping mechanism, anxiety attack, suicidal thoughts, inpatient hospitalization for anxiety, depression & suicidality)

Alison Troy, an expecting mother and hair stylist, has lived with epilepsy since she was a child. Listen to Alison's incredible story of growing up with epilepsy, overcoming obstacles, and how she is currently living seizure-free.

Chloe Rossignol is an occupational therapist who has lived with epilepsy for much of her life. Chloe had a second chance at life. Listen to her story

On this episode we speak with Chris, who has been living with epilepsy for 19 years. When he was first diagnosed, Chris struggled with coming to terms with his new reality, but as he got older, he has discovered that he has the power to help others who are going through the same thing. Thank you to Kevin McLeod for the music.

In today's episode we speak with Nathaniel and his family. Nathaniel's story is a powerful one, filled with growth, compassion, and resiliency. He comes on the podcast to reflect the importance of positivity when living with epilepsy. Thank you to Kevin McLeod for the music for this episode.

In today's episode, we speak to Dorothy, someone who has been through a lot on her journey with Epilepsy. Dorothy had multi-drug resistant epilepsy that truly controlled her life. Despite this, Dorothy continued to fight against the odds, and is now a college graduate with a driver's license. Dorothy's story is powerful and shows how important it is to never give up. Music for this episode was provided by Kevin McLeod.

Season 2 of Epilepsy Voices is here! We are happy to be back and ready to share more stories about those affected by epilepsy. This first episode is a powerful one - Jodi shares her incredible journey, which has helped her become an advocate and inspiration for those with epilepsy. Music for this episode was provided by Kevin McLeod.

Ιn this episode, we hear from John and Wendy, whose daughter has Dravet syndrome, a rare form of epilepsy. They tell their story of raising their two children, share tips and tricks that helped them in their journey, and talk about how they work as a team to provide their very athletic daughter with the support and opportunities that allow her to thrive. Music for this episode was provided by Kevin McLeod.

What do you do when an epilepsy diagnosis threatens to redefine your identity? This is a question that our guest today had to wrestle with. Molly is a twenty-year-old college graduate, who brings a fresh, inspiring perspective to the table of what it’s like to have her young adult years marked by an unexpected diagnosis. While her seizures have been utterly debilitating at times, Molly has found hope and even joy in the face of such a difficult condition and shares with us the unique and inspiring journey of what brought her to where she is today. Music for this episode was provided by Kevin McLeod.

In the latest episode of Epilepsy Voices, we talk with Emma, whose sister was diagnosed with epilepsy and brain damage as a young child. She talks about Sara’s difficulties and how she refuses to let them define her. Emma shares how her sister’s epilepsy has ultimately made her a more compassionate and patient person, and has helped shape her education. Despite the challenges they have faced, Emma and Sara have formed a special bond as sisters, and learned to live life to the fullest and enjoy every day. Music for this episode was provided by Kevin McLeod.

In the latest episode of Epilepsy Voices, we talk with Beth, a social worker and mother of Sara, who was diagnosed with epilepsy and brain damage as a young child. She talks about Sara’s developmental difficulties and how they have impacted her social life and daily living, and shares her concerns about transitioning in the future. But despite the challenges they have faced, Beth and Sara have formed a special bond as mother and daughter, and learned to live life to the fullest and enjoy every day. Music for this episode was provided by Kevin McLeod.

Donna is a mother whose daughter has epilepsy, autism, and intellectual disability, among other diagnoses. She shares about how she found residential placement for Lindsey, what the beginning of the transition process has looked like for her, and gives advice for those who may be struggling with helping their children find the right place to live. Music for this episode was provided by Kevin Mcleod.

Darlene and Nick are parents of four children, including twins Emma and Charlotte, who were born eighteen months ago. Emma was recently diagnosed with epilepsy, which has sent Darlene & Nick’s family and lives down a path they never saw coming. Still very new to the diagnosis and world of epilepsy, Darlene and Nick offer a very current take on the grief and uncertainty that accompany their daughter’s diagnosis, the journeys each of them has taken toward understanding and accepting their new normal, and the support systems they have relied on along the way. Music for this episode was provided by Kevin Mcleod.

Today on Epilepsy Voices, Andres and Ashley hear from Katie, an RN whose daughter Abbey began having seizures as an infant, and was later diagnosed with a rare condition known as Rett Syndrome. Katie shares how the diagnosis has impacted her family, what she wishes she knew early on, and how other families can learn from her dual experience as a mom and nurse. Music for this episode was provided by Kevin McLeod.

9-year-old Katie has had absence series for most of her life. Although it seems she is just staring into space, inside part of her brain is dealing with a seizure. Katie has had to adapt to new medicine and share her needs with those she’s close to, and is now working on becoming a voice for epilepsy in Massachusetts. On air, Katie speaks with her hero an Olympic ice hockey player who has also come to terms with epilepsy. The music for this podcast was provided by Kevin McLeod.

On this special episode of Epilepsy Voices, we are joined by Susan Welby, the director of education and volunteer services for the Epilepsy Foundation New England. Here she offers a professional perspective on what friends, family, and advocates can do for those dealing with epilepsy. The music for this podcast was provided by Kevin McLeod.

Epilepsy is a different journey for every person. In the pilot episode of Epilepsy Voices, we hear from Ashley, a mental health professional diagnosed with a rare form of epilepsy that affects only 100 families in the world. At sixteen, Ashley’s world was turned upside down when she received her diagnosis and had to find a new normal, all while navigating college, relationships, and her career. She gives advice on finding support and prioritizing self-care, and speaks words of encouragement to anyone living with epilepsy who’s trying to find hope. The music for this podcast was provided by Kevin McLeod