Displaying episodes 1 - 30 of 106 in total

"Supporting Family Caregivers..."

Welcome to Connecting ALS. This week, Jeremy is joined by guest co-host Ken Paves to dig into some of the challenges of being a caregiver and Nancy LeaMond from AARP to talk about some of the ongoing public policy fights that will provide additional support for family caregivers.

"Moving ACT for ALS in Congress…"

Welcome to Connecting ALS. This week, Jeremy is joined by guest co-host Ashely Smith, The ALS Association’s Director of Advocacy, and talks to Rep. Mike Quigley (D-Ill.) to discuss the unanimous subcommittee vote to advance ACT for ALS in the House.

"Family Caregivers Month..."

Welcome to Connecting ALS. This week, Jeremy is joined by guest co-host Steve Becvar, Ann Larson, and Jennifer Myhre to kick off National Family Caregivers Month.

"Developing New Drugs…"

Welcome to Connecting ALS. This week Jeremy is joined by guest co-host Dr. Kuldip Dave and Dr. Daniel Elbaum to dig into the Lawrence and Isabel Barnett Drug Development Program.

"Genetic Counseling and Testing…"

Welcome to Connecting ALS. This week, Jeremy is joined by guest co-host Dr. Jill Yersak and Ellie Harrington to discuss the benefits of genetic counseling and learn more about some of the common questions that are answered in a genetic counseling session.

"Medicare Open Enrollment…"

Welcome to Connecting ALS. This week, Jeremy is joined by Dr. Neil Thakur, chief mission officer at The ALS Association, to talk about the efforts to make sure Medicare works for people living with ALS, and talks to Courtney Jones at the Patient Advocate Foundation about navigating the Medicare open enrollment period.

"Maintaining Good Nutrition..."

Welcome to Connecting ALS. This week, to commemorate Malnutrition Awareness Week, Jeremy is joined by Stephanie Dobak, a clinical dietician at the Jefferson Weinberg ALS Center, to discuss ways to avoid malnutrition while living with ALS or caring for a person with ALS.

"Reducing Time to Diagnosis…"

Welcome to Connecting ALS. This week, Jessica and Jeremy are joined by Dr. Suma Babu to discuss thinkALS, a new diagnostic guide built to help medical professionals shorten the time it takes to confirm an ALS diagnosis.

"Where the Fight to Protect Access to Telehealth Goes Next…"

Welcome to Connecting ALS. This week, Jeremy and Jessica celebrate Telehealth Awareness Week with Kyle Zebley, Vice President of Public Policy at the American Telemedicine Association, who reminds us: Telehealth is health.

"Fight for AMX0035 Approval Moves Forward With Amylyx NDA Announcement..."

Welcome to Connecting ALS. This week Jeremy and Jessica talk to the team at Amylyx to discuss their recent announcement that the company intends to submit a New Drug Application for AMX0035 and the path ahead to make sure the drug is available as soon as possible.

"Finding Ways to Reduce Caregiver Burden and Harms…"

Welcome to Connecting ALS. This week, Jessica and Jeremy are joined by Dr. Sarah Parvanta and Michael Trainor to discuss the recent findings from the second ALS Focus survey, which focused on the needs of caregivers.

"Helping Students Affected By ALS Overcome Financial Hardships…"

Welcome to Connecting ALS. This week, Jessica and Jeremy are joined by Ally Halverson and Emma Thompson, two recipients of the Jane Calmes ALS Scholarship Fund, to talk about their connection with ALS and how their scholarships are helping them overcome the financial burden of ALS and pursue education and careers focused on caring for others.

"Identifying an Earlier Domino in Cellular Breakdown Connected to ALS…"

Welcome to Connecting ALS. This week, Jessica and Jeremy are joined by Dr. Jeffrey Rothstein and Dr. Alyssa Coyne to discuss their recent publication of research identifying a cellular defect common in ALS and what it means for research into the disease going forward.

"Optimizing Care Through A New Partnership With VA…"

Welcome to Connecting ALS. This week, Jessica and Jeremy are joined by Lori Banker-Horner to discuss a new partnership with the U.S. Department of Veterans Affairs to expand access to multidisciplinary care, and the work being done to optimize care.

"Living With ALS When A Natural Disaster Hits…" [Replay]

Welcome to Connecting ALS. This week's episode is a replay of one of our favorites from 2020; we are joined by Donnie Graham and Jan Steinbock, who tell us how they are facing wildfires and a global pandemic with ALS.

"Taking the Fight Against ALS to the Halls of Congress…"

Welcome to Connecting ALS. This week, Jeremy and Jessica are joined by Dr. Neil Thakur and Abram Bieliauskas to reflect on a recent congressional subcommittee hearing focused on advancing treatments and cures for neurodegenerative diseases and where the fight goes from here.

"Midyear Checkup on the Fight Against ALS…"

Welcome to Connecting ALS. This week, Jeremy and Jessica are joined by Calaneet Balas, president and CEO of The ALS Association. Calaneet provides an update on the progress made in the fight during the first half of 2021 and discusses what it will take to push the fight forward into the future.

"Summer Vacation and ALS…"

Welcome to Connecting ALS. With summer travel season in full bloom, Jeremy and Jessica revisit a conversation around overcoming the challenges of living with ALS.

"Drawing Inspiration from Eddie Ilarazza…"

Welcome to Connecting ALS. This week, Jeremy and Jessica share the inspiring story of Eddie Ilarazza, an author and social worker who was diagnosed with ALS in 2002 and who talks about fulfilling his dreams, his commitment to serving others and how he is making his community a better place.

"Recruiting New Researchers to the Search for Treatments…"

Welcome to Connecting ALS. This week, Jeremy and Jessica are joined by Dr. Jill Yersak, vice president of mission strategy for The ALS Association, to discuss efforts to bring new researchers into the field to speed up the search for treatments and a cure.

"Recent Developments on Drug Development at FDA…"

Welcome to Connecting ALS. This week, Jeremy and Jessica are joined by Dr. Neil Thakur, chief mission officer of The ALS Association, for an update on the continued fight to get the FDA to move more quickly in approving promising drugs for the treatment of ALS.

"Checking in on the Global Fight Against ALS..."

Welcome to Connecting ALS. This week, Jessica and Jeremy are joined by Cathy Cummings, executive director of the International Alliance of ALS/MND Associations, to discuss Global ALS/MND Awareness Day and the work that is being done all over the world in the fight against ALS.

"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.

Brought to you by The ALS Association. © 2021 The ALS Association