Amplifying the Patient Journey

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 Friedrich ataxia.

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 Boston, MA who discusses the PLATFORM-ALS trial and the drugs currently in the clinical research and development pipeline.

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 disease.

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 shares her experiences with amyloidosis and how she approached conversations with her family about this disease, as well as hATTR amyloidosis expert, Dr. Saurabh Malhotra, Director of Advanced Cardiac Imaging at Cook County Health, Chicago, IL. For more information on the Family Health History Road Trip visit https://www.hattrbridge.com/roadtrip

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 recovery journey. 

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.