Displaying episodes 1 - 30 of 84 in total

"Health Care Disparities and ALS…"

Welcome to Connecting ALS. This week, Jeremy and Jessica are joined by Dr. Michael Cartwright, co-author of a study on racial differences in ALS interventions, to talk about some of the racial disparities research has uncovered in the ALS journey and the need for more research to understand why.

"Making ALS A Livable Disease By Finding New Treatments…"

Welcome to Connecting ALS. This week, Jeremy and Jessica are joined by Dr. Kuldip Dave, vice president of research at The ALS Association, to dig into the path toward making ALS a livable disease.

"Next Steps in Speeding Up the Drug Development Process…"

Welcome to Connecting ALS. This week, Jeremy is joined by co-host Jessica Chapman to get an update on all the work being done to speed up the process of getting promising new treatments to people with ALS.

"Continuing to Fight for Access to Promising Treatments…"

Welcome to Connecting ALS. This week Jeremy is joined by co-host Jessica Chapman to talk with Larry Falivena, a member of The ALS Association Board of Trustees and a speaker at the We Can’t Wait Action Meeting with the FDA.

"Managing the Financial Impact of an ALS Diagnosis…"

Welcome to Connecting ALS. This week, Jeremy talks to Brian Chappell, a wealth advisor and portfolio manager at UBS, to explore the devastating financial impact of an ALS diagnosis and some tips on navigating the expense.

"Every Moment Matters…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Sue Seabrook; a wife, a mom, a sister, and a caregiver for her mother living with ALS. Sue talks about the ways her family is embracing all the moments that matter in life.

"Engaging Kids in the Fight Against ALS…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Rebecca Wetzel, an educator and philanthropist, who partnered with The ALS Association to launch the ALS Youth Challenge in 2019.

“Exploring the Connection Between CTEs and ALS…”

Welcome to Connecting ALS. This week, Mike and Jeremy talk to Dr. Chris Nowinski, co-founder and CEO of the Concussion Legacy Foundation, to check in on the state of research into the connection between frequent traumatic brain injuries and neurological diseases.

"Expanding Access to Telehealth for Speech-Language Pathology…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Amy Roman, a speech and language pathologist at the Forbes Norris ALS Research and Treatment Center at California Pacific Medical Center in San Francisco, to discuss recent changes to Medicare that will expand access to telehealth to include speech-language pathology.

"Supporting Young Caregivers…"

Welcome to Connecting ALS. This week, Sandra Sullivan, The ALS Association’s director of chapter communications, talks to Sarah Trott, a former contestant on The Bachelor, about her connection to ALS and her work trying to support and connect young caregivers like herself around the country.

"Walk Your Way to Defeat ALS…"

Welcome to Connecting ALS. This week we dig into the creative and innovative ways walk teams are embracing the opportunity to Walk Your Way during the 2021 spring Walk to Defeat ALS season.

"A New Season Begins in Baseball’s Longstanding Commitment to Fighting ALS…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Chuck Haberstroh and Adam Wilson, co-chairs of the committee who led the fight to create Lou Gehrig Day.

"Gearing Up for Another Big Year in ALS Advocacy..."

Welcome to Connecting ALS. This week, Mike and Jeremy welcome back Ashley Smith, The ALS Association's Associate Director of Grassroots Advocacy, for an overview of 2021 legislative and appropriation priorities.

"Focusing on the Best in Patient Care in Hospital and Clinic Settings…"

Welcome to Connecting ALS. This week, Mike and Jeremy recognize Patient Safety Awareness Week with Leslie Ryan and welcome Lauren Brown in celebration of Certified Nurse’s Day.

"Maintaining Good Nutrition With ALS…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Megan Frisk, a dietician and the care services coordinator at The ALS Association Rocky Mountain Chapter, to serve up some helpful tips on maintaining good nutrition while living with ALS.

"Finding Hope on the Horizon Through ALS Research…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Dr. Kuldip Dave, vice president of research at The ALS Association, to discuss some recent news in ALS research and signs of hope on the horizon.

"Showing Our Stripes for Rare Disease Day…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Debbie Drell, director of membership at the National Organization for Rare Disorders, to discuss Rare Disease Day, the origin of NORD’s “Show Your Stripes” campaign and how NORD’s patient advocacy work has continued during the pandemic.

"Traveling While Living With ALS…"

Welcome to Connecting ALS. This week, Mike and Jeremy explore the challenges of traveling while living with ALS and some ways to plan ahead to make your next trip a success.

"Honoring International Day of Women and Girls in Science…"

Welcome to Connecting ALS. This week, Mike and Jeremy commemorate International Day of Women and Girls in Science with Drs. Ericka Greene and Sandrine Da Cruz.

"The Importance of Hearing From Caregivers About Their Needs…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Dr. Sarah Parvanta, director of ALS Focus, to learn how the voices of ALS caregivers are being elevated to make sure services and programs are tailored to their needs.

"Health Care Advocacy Blueprint for the First 100 Days…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Katie Berge, director of federal affairs at The Leukemia & Lymphoma Society. Katie walks us through the first 100 days of the Biden administration and lays out the health care fights ahead.

"A Conversation with MLB Umpire, Phil Cuzzi..."

Welcome to Connecting ALS. In this bonus episode, Mike has a conversation with legendary Major League Baseball umpire, Phil Cuzzi, about his personal connection to ALS and what he's doing to make a difference.

"Checking in on Access to COVID-19 Vaccines…"

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Dr. Richard Bedlack, director of the Duke ALS Clinic, for an update on the COVID-19 pandemic and the latest on access to vaccines.

"Bringing the Five-Month Waiting Period for SSDI Benefits to an End…"

Welcome to connecting ALS. This week, Mike and Jeremy talk to Senator Sheldon Whitehouse of Rhode Island to look back on the passage of the ALS Disability Insurance Access Act.

"Managing COVID-19 and Social Distancing While Living With ALS..." [Replay]

Welcome to Connecting ALS. This week's episode is a replay of one of our favorites from 2020; we talk to three families who share their experiences living with ALS during the COVID-19 pandemic.

"A Look Back on the Year in ALS Care Services…"

Welcome to Connecting ALS. This week, we are joined by Lori Banker-Horner, The ALS Association’s director of clinical programs and Leslie Ryan, the Association’s director of education and professional development programs, to reflect on the delivery of clinical care in 2020 and to look ahead to the coming year.

"A Look Back on the Year in ALS Advocacy…"

Welcome to Connecting ALS. This week, we are joined by Abram Bieliauskas, associate director of government affairs at The ALS Association, to reflect on some big wins for ALS advocates in 2020 and to look ahead at the fights to come in 2021.

"Exploring What We Know About the COVID-19 Vaccines…"

Welcome to Connecting ALS. This week, we are joined by Dr. Clifton Gooch who takes us through the latest news on the COVID-19 vaccines, explains their safety and efficacy, and talks about what they mean for people with ALS.

"A Look Back on the Year in ALS Research…"

Welcome to Connecting ALS. We are joined by Dr. Jill Yersak, vice president of mission strategy at The ALS Association, who walks us through some of the highlights in ALS research from 2020, how ALS researchers persevered through the pandemic, and what has her excited heading into 2021.

"Digging into the ACT for ALS…"

Welcome to Connecting ALS. We are joined by Sen. Lisa Murkowski (R-Alaska) to discuss the ACT for ALS bill, the Senate’s push to double funding for the ALS Research Program at the Department of Defense to $40 million, and why she became a leader in the fight against ALS.

Brought to you by The ALS Association. © 2020 The ALS Association