Displaying episodes 1 - 30 of 130 in total

"A Pivotal Time in ALS Research…"

Welcome to Connecting ALS. This week we talk with Jim Essey about the progress made in ALS research over the years and why he sees hope on the horizon.

"Preventing Harms to Young Caregivers..."

Welcome to Connecting ALS. This week we talk to Dr. Melinda Kavanaugh about her research and learn about programs that help kids who serve as caregivers.

"Next Steps in the Fight Against ALS..."

Welcome to Connecting ALS. This week we kick off ALS Awareness month with Scott Kauffman who shares his connection to ALS and his vision for leading the fight against the disease.

"The Economic Burden of Rare Diseases..."

Welcome to Connecting ALS. This week Annie Kennedy from the EveryLife Foundation for Rare Disease talks with us about their recent report on the economic burden of rare diseases.

"How Volunteers are Pushing the Fight Against ALS Forward..."

Welcome to Connecting ALS. This week Lindsay Litterini talks about why she volunteers in the fight against ALS and we check in with Stephanie Dobrak to learn what advocates can do to protect access to telehealth.

"Why I Signed the ICER Petition…"

Welcome to Connecting ALS. This week Daniel Cramer explains why he is signing a petition calling on insurers to ban the use of discriminatory value assessments that limit access to ALS drugs.

The 2022 Sheila Essey Award Winner…

Welcome to Connecting ALS. This week Jeremy talks to Dr. Matthew Kiernan, a neurologist at the Brain and Mind Centre at the University of Sydney in Australia and the recipient of the 2022 Sheila Essey Award.

ALS Clinical Trials...

Welcome to Connecting ALS. This week Dr. Kuldip Dave joins the show to explore clinical trials.

"Maintaining Mobility..."

Welcome to Connecting ALS. This week Dr. Shannon Terrell talks with us about ways to maintain mobility while living with ALS.

"The Fight for Federal Funding…"

Welcome to Connecting ALS. This week, Denise Bailin talks with us about federal appropriations and the fight to secure funding for ALS research. We then speak with Marianne Keuhn about efforts to fund the fight against ALS at the Minnesota statehouse.

"Expanded Access to Promising Treatments..."

Welcome to Connecting ALS. This week Dr. Alison Bateman-House walks us through the work being done to expand the ethical allocation of drugs that are currently in development.

"Accelerating and Growing the Drug Development Pipeline…"

Welcome to Connecting ALS. This week we turn to Dr. Neil Thakur for an update on implementing the ACT for ALS and we dig into the latest developments on reviews of AMX0035 by the FDA and ICER.

"Understanding PLS..."

Welcome to Connecting ALS. This week Dr. David Walk helps us understand primary lateral sclerosis better as we discuss some of the similarities and key differentiators between PLS and ALS.

"Handling Grief and Loss..."

Welcome to Connecting ALS. This week we look for insight on how to handle and talk about grief and loss with Sarah Trott and JoCarolyn Chambers.

"ICER Set to Review AMX0035…"

Welcome to Connecting ALS. This week we discuss a cost-effectiveness review of AMX0035 by ICER and criticisms of the organization’s methodology that has been called discriminatory toward people with disabilities.

"Facilitating Access to Clinical Care…"

Welcome to Connecting ALS. This week we get an inside view of how care services coordinators are making sure people with ALS have access to the best care available.

"ALS Research in 2022…"

Welcome to Connecting ALS. This week we look to the year ahead in ALS research and how a drug rescue analysis project might change our approach to finding treatments and cures.

"ALS Advocacy in 2022…"

Welcome to Connecting ALS. This week we celebrate the passage of the ACT for ALS and look ahead to the year's advocacy efforts.

"Expanding Access to Care…"

Welcome to Connecting ALS. This week we look at how access to high quality health care can be expanded and the work being done to make it happen.

"Whatever It Takes to Deliver Hope…"

Welcome to Connecting ALS. This week we discuss what was achieved in 2021 and look ahead to 2022 with Calaneet Balas

"International Fight Against ALS Year in Review…"

Welcome to Connecting ALS. This week we look at the global fight against ALS with Cathy Cummings and Jessica Mabe from the International Alliance of ALS/MND Associations.

"Survey Results on Telehealth Use and Benefits…"

Welcome to Connecting ALS. This week we look at the results of our recent ALS Focus survey on the use and benefits of telehealth.

"2021 in Review…"

Welcome to Connecting ALS. This week, we look back at the accomplishments of 2021 with president and CEO of The ALS Association, Calaneet Balas.

"Holidays With ALS..."

Welcome to Connecting ALS. This week, Jeremy is joined by Dr. Heidi Tarr Henson, a life coach and consultant who was diagnosed with ALS in 2021, who discusses in-the-moment advocacy, teachable moments and the power of setting boundaries with ourselves and others.

"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.

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