Connecting ALS

This week, Jeremy checks in on the global fight against ALS with guest co-host Cathy Cummings, Executive Director of the International Alliance of ALS/MND Associations. He also interviews Jessica Mabe from the Alliance for a report from the group’s annual meeting and the Allied Professionals Forum.

To learn more about the Alliance Meeting, go to https://www.als-mnd.org/events-programs/alliance-meeting/

Learn more about the Allied Professionals Forum at https://www.als-mnd.org/events-programs/alliance-meeting/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy digs into new survey data on the ALS community’s use of telehealth with guest co-host Larry Falivena, a member of The ALS Association’s Board of Trustees and the ALS Focus Patient and Caregiver Advisory Committee, and Dr. Sarah Parvanta, director of ALS Focus.

To dive deeper into the results of the ALS Focus telehealth survey go to https://www.als.org/research/als-focus/survey-results/survey-4-results

Sign up to participate in ALS Focus at https://www.neuroserver.org/als-focus/Home/login

Find data from past ALS Focus surveys at https://www.als.org/research/als-focus/survey-results

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by Calaneet Balas, president and CEO of The ALS Association, to look back on the progress made in the fight against ALS in 2021 and the commitment to continue to do Whatever it Takes to deliver hope and impact.

Learn more about the impact the Association was able to have in 2021 at https://www.als.org/2021-year-end-report

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

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.

Read Dr. Henson’s blog post on setting boundaries at https://www.als.org/massachusetts/blog/roles-redefined-als-advocate-and-teacher-guest-blogger-dr-heidi-tarr-henson

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by guest co-host Ken Paves, a celebrity hair stylist and entrepreneur who is the primary caregiver for his mother to dig into some of the challenges of being a caregiver. Later, Jeremy talks to Nancy LeaMond from AARP about some of the ongoing public policy fights that will provide additional support for family caregivers.

Learn more about caregiver needs at https://www.als.org/research/als-focus/survey-results/survey-3-results

Sign up to participate in the current ALS Focus survey at https://www.neuroserver.org/als-focus/Home/login

Find resources for caregivers at https://www.als.org/navigating-als/for-caregivers

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

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. Ashley also provides an update on the fights for expanded access to telehealth and increased veterans benefits for people with ALS and their families.

To learn more about ACT for ALS, go to https://www.als.org/blog/great-news-house-subcommittee-unanimously-approves-act-als

For more information on the connection between ALS and military service go to https://www.als.org/navigating-als/military-veterans

To participate in ALS Focus, go to https://www.neuroserver.org/als-focus/Home/login

Dive deeper into the Associations work to get ACT for ALS passed into law and listen to an earlier discussion on ways to speed up the drug development process https://www.connectingals.org/episodes/next-steps-in-speeding-up-the-drug-development-process

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by guest co-host Steve Becvar, executive director of The ALS Association’s Greater San Diego Chapter, to kick off National Family Caregivers Month. Jeremy also talks to Ann Larson, who was a caregiver to her husband during his fight against ALS, about the challenges of being a caregiver, and to Jennifer Myhre, care services coordinator at The ALS Association MN/ND/SD Chapter, about some of the ways we can support caregivers.

To find resources for supporting caregivers, go to https://www.als.org/navigating-als/for-caregivers

Read more about the ALS Focus results discussed in this episode at https://www.als.org/research/als-focus/survey-results/survey-3-results

To participate in the ALS Focus survey on mobility, go to https://www.neuroserver.org/als-focus/Home/login

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy is joined by guest co-host Dr. Kuldip Dave, vice president of research at The ALS Association, and interviews Dr. Daniel Elbaum, chief scientific officer at QurAlis, to dig into the Lawrence and Isabel Barnett Drug Development Program.

Learn more about the Lawrence and Isabel Barnett Drug Development Program at https://www.als.org/research/research-we-fund/partnerships-initiatives/lawrence-and-isabel-barnett-drug-development

See how the Barnett family continues to lead in the fight against ALS at https://www.als.org/blog/meet-sophia-harding-carrying-her-great-grandfathers-legacy-fight-against-als

Stay up-to-date with the latest ALS research news by signing up for The ALS Association’s monthly e-newsletter, Research Matters https://www.als.org/research-matters-sign-up

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by guest co-host Dr. Jill Yersak, vice president of mission strategy at The ALS Association, to discuss the benefits of genetic counseling and the potential benefits of genetic testing for people living with ALS. Jeremy also talks to Ellie Harrington, a certified genetics counselor at the Eleanor and Lou Gehrig ALS Center at Columbia University Medical Center, to learn more about some of the common questions that are answered in a genetic counseling session.

Learn more about the genetics of ALS at https://www.als.org/research/research-we-fund/scientific-focus-areas/genetics

For more information on genetic counseling go to https://www.als.org/understanding-als/who-gets-als/genetic-testing/genetic-counseling

Find out what genetic testing can tell you at https://www.als.org/understanding-als/who-gets-als/genetic-testing

For tips on how to discuss genetic counseling and genetic testing with your doctor, go to https://www.als.org/understanding-als/who-gets-als/genetic-testing/how-discuss-genetic-testing-your-doctor

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

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.

Access the Medicare resource line at https://www.als.org/navigating-als/financial-information/medicare-information/als-medicare-resource-line

To learn more about Medicare go to https://www.als.org/navigating-als/financial-information/medicare-information

For tips on navigating open enrollment go to https://www.als.org/blog/navigating-medicare-open-enrollment

Hear Dr. Thakur’s comments to CMS about optimizing Medicare at https://www.als.org/blog/als-association-cms-administrator-we-urge-you-listen-people-living-als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.