Amplifying the Patient Journey

In this episode, Bill Nye—science communicator, television presenter, and ataxia advocate—shares his experience growing up in a family affected by ataxia, discusses the challenges of individuals living with rare neurologic diseases, and reflects on how he has been impacted by the knowledge of his own risk. He is joined by Lauren Moore, PhD, Vice President of Research and Chief Scientific Officer o...

Dr. Nina Mosier, MD, an Internal Medicine physician specializing in Geriatric Medicine, shares the journey of her father after his diagnosis with Parkinson Disease. She also discusses the importance of movement in these patients and describes Power for Parkinson's, the movement organization for she co-founded and serves as executive director. Resources: https://www.powerforparkinsons.org/https://w...

Andrew Cherico, a student at the University of Central Florida, Orlando, FL, discusses his experience living with spinal muscular atrophy (SMA), the impacts of available treatments, and how the condition intersects with his passion for sports journalism. He is joined by John W. Day, MD, PhD, Professor of Neurology and Pediatrics, Director, Division of Neuromuscular Medicine at Stanford University...

In this episode, Nicole Watson shares her daughter Emma’s powerful journey living with Dravet syndrome, a rare and severe form of epilepsy. From the early days of uncertainty and searching for answers to finding the right care and treatment, Nicole opens up about resilience, hope, and the lessons learned along the way. Her story offers heartfelt insight for families, caregivers, and healthcare pro...

Ardra Shephard, a musician, author, fashion-show TV host, podcaster, and MS advocate, discusses her experiences living with MS, including how she uses her story to educate and encourage others living with MS. She is joined by Jiwon Oh, MD, Medical Director of the Barlo Multiple Sclerosis Program at St. Michael’s Hospital, Toronto, ON, who describes how advancements in the diagnosis and treatment o...

Lisa Volenec, a patient advocate and General Manager of KMTV, Omaha, NE, shares how incorporating lifestyle modifications—such as diet, exercise, and community engagement—has enhanced her Parkinson disease treatment. She is joined by double-board-certified neurology and lifestyle medicine physician and fellowship-trained movement disorder specialist Rachel Dolhun, MD, DipABLM, principal medical ad...

How can neurologists partner with their patients living with Parkinson disease? Kathleen Blake, MD, MPH, Santa Fe, NM, Vice Chair of the Parkinson's Foundation People with Parkinson’s Advisory Council, discusses Parkinson disease care from her unique perspective as both a patient and former physician.

Melody Barthelemy, a human resources specialist, details her experiences living with migraine, including strategies for tracking episodes and thriving with a busy career. She is joined by Dawn C. Buse, PhD, Clinical Professor, Albert Einstein College of Medicine, New York, NY, who discusses recent research in the field. 

Linda Shows, a semi-retired nurse who lives with mild cognitive impairment, and her physician, Wendell Helveston, MD, Hattiesburg Clinic, Hattiesburg, MS, discuss the importance of early diagnosis and treatment in Alzheimer disease, including other factors that can help patients thrive when living with this condition. 

After an attack leading to multiple surgeries and a traumatic brain injury, survivor Kel Mabatah developed a rehabilitation scholarship that enables TBI patients to continue therapy after insurance runs out. Kel is joined by Alfreida Melvin, mother of Dontel, who is a recipient of the scholarship from the “Kel Strong” Mabatah Foundation. https://www.kelstrongfoundation.com/

We speak with neuromuscular disease expert David Lynch, MD, PhD, attending neurologist in the Division of Neurology at Children's Hospital of Philadelphia and director of the Friedreich Ataxia Program, about the emerging treatment landscape for Friedeich Ataxia as well as Kiersten Riggs, who discusses the events leading to her Friedrich Ataxia diagnosis and how she has adapted to life with Friedri...

In this episode, Gwen Petersen discusses her long journey to receiving an ALS diagnosis at age 32, her contributions to a Cytokinetics book project, and the importance of clinical trial participation. We are also joined by Merit Cudkowicz, MD, MSc, Head of the Department of Neurology, Chief of Neurology, and Director of the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital in B...

AJ Tesler shares the story of his daughter, Magnolia, who is living with Rett syndrome. As a parent and caregiver, AJ provides his perspective throughout the diagnostic and therapeutic journey for Rett syndrome and is joined by Rett syndrome expert Carey Fu, MD, Pediatric Neurologist at Vanderbilt University Medical Center in Nashville, TN.

Richard Huckabee is a patient living with Parkinson disease and a Parkinson’s Foundation "Aware in Care" ambassador and research advocate. Mr. Huckabee is enrolled in the PD GENEration study, a national initiative offering no-cost genetic testing and counseling for people with Parkinson disease, and he discusses some of the barriers he faced in receiving a diagnosis of Parkinson disease.

Chantale Branson, MD, Associate Professor of Neurology at Morehouse School of Medicine, Atlanta, GA, is a researcher working on the pivotal PD GENEration study, which aims to improve treatment options through the identification of clinically relevant genes linked to Parkinson disease. In this episode, Dr. Branson provides context for the social barriers faced by people of color who have Parkinson...

Bernice Bennett, genealogist, health education specialist, and co-founder and faculty member of the Midwest African American Genealogy Institute, discusses the Family Health History Road Trip, which emphasizes the important role family health history can play in driving earlier diagnosis of hATTR amyloidosis. Bernice is joined by Giselle, a program participant living with hATTR amyloidosis who sha...

Elisabeth Beraquit, a Philadelphian, CPA, and former bakery owner, recounts her painstaking journey of recovery from a traumatic brain injury due to a 30 foot fall. 

Siva Murugappan, MD, General Surgeon, Chatham-Kent Health Alliance, Ontario, Canada, shares his own experiences as a patient recovering from an ischemic stroke. He is joined by his wife and caregiver, Dr. Prema Samy, Otolaryngologist, Chatham-Kent Health Alliance, Ontario, Canada, as they both discuss their transition from physician, to their respective roles as patient and caregiver in the recove...

PingPongParkinson founder, Nenad Bach, discusses why he started PingPong Parkinson. He is joined by Gabe Elkinson and Ryan Dong, two high school students who started a PingPongParkinson chapter in Georgia, and Pierre Russell, a PingPongParkinson participant. 

Caregivers play an important part in the patient journey, especially with conditions such as epilepsy. Actor and podcast host of "Talk About It!" Greg Grunberg discusses how caregivers can educate themselves and their loved ones about how best to thrive.

Neuromusclar disease expert Diana Bharucha-Goebel, MD, PhD chats with Traci High, mother of two patients with SMA about how the SMA treatment landscape, and her childens' lives, have changed over the past 15 years.

Neuromuscular disease expert Charlotte Sumner, MD chats with her patient Nicole Moore about some of her life goals and how recent treatment options have changed the conversations between them.