Connecting ALS
206 episodes - English - Latest episode: 7 months ago - ★★★★★ - 48 ratingsConnecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
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Episodes
"Family Caregivers Month..."
November 04, 2021 04:01 - 36 minutes - 67.7 MBThis 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 support...
"Developing New Drugs…"
October 28, 2021 04:01 - 23 minutes - 42.2 MBThis 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...
"Genetic Counseling and Testing…"
October 21, 2021 14:00 - 26 minutes - 49.4 MBThis 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 sessi...
"Medicare Open Enrollment…"
October 14, 2021 14:00 - 21 minutes - 38.9 MBThis 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.al...
"Maintaining Good Nutrition..."
October 07, 2021 14:00 - 21 minutes - 40.1 MBThis 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. For more information about maintaining good nutrition while living with ALS, check out https://www.als.org/navigating-als/living-with-als/therapies-care/nutrition-feeding-tubes For some easy chew, easy swallow recipes, go to https://www.als....
"Reducing Time to Diagnosis…"
September 30, 2021 14:00 - 21 minutes - 39.3 MBThis week, Jessica and Jeremy are joined by Dr. Suma Babu, assistant professor of neurology at Harvard Medical School and a member of The ALS Association’s Time to Diagnosis Working Group to discuss thinkALS, a new diagnostic guide built to help medical professionals shorten the time it takes to confirm an ALS diagnosis. To read more about thinkALS, go to https://www.als.org/stories-news/als-association-creates-thinkals-tool-help-doctors-speed-diagnosis-process Meet the Time to Di...
"Where the Fight to Protect Access to Telehealth Goes Next…"
September 23, 2021 14:00 - 28 minutes - 51.8 MBThis 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. Learn more about the work being done to protect access to telehealth at https://www.als.org/stories-news/expand-telehealth-access-permanently Become an advocate and join the fight for access to telehealth at https://als.quorum.us/register/ Find out more about the American Telemedicine As...
"Fight for AMX0035 Approval Moves Forward With Amylyx NDA Announcement..."
September 16, 2021 14:00 - 22 minutes - 41 MBThis 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. Learn more about The ALS Association’s support for the development of AMX0035 at https://www.als.org/stories-news/als-association-applauds-amylyxs-amx0035-announcement-urges-swift-fda-approval Learn how the case of AMX0035 proves advocacy from the...
"Finding Ways to Reduce Caregiver Burden and Harms…"
September 09, 2021 15:00 - 41 minutes - 76.1 MBThis week, Jessica and Jeremy are joined by Dr. Sarah Parvanta, director of ALS Focus, and Michael Trainor, a member of the ALS Focus Patient and Caregiver Advisory Committee. Dr. Parvanta and Michael discuss the recent findings from the second ALS Focus survey, which focused on the needs of caregivers. To learn more about the ALS Focus program, go to https://www.als.org/research/als-focus Sign up to participate in ALS Focus at https://www.als.org/research/als-focus/als-focus-regi...
"Helping Students Affected By ALS Overcome Financial Hardships…"
September 02, 2021 15:00 - 38 minutes - 69.8 MBThis week, Jessica and Jeremy are joined by Ally Halverson and Emma Thompson, two recipients of the Jane Calmes ALS Scholarship Fund. Ally and Emma 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. To learn more about the Jane Calmes ALS Scholarship fund, go to https://www.als.org/get-involved/jane-calmes-als-scholarship-fund This episode was produced ...
"Identifying an Earlier Domino in Cellular Breakdown Connected to ALS…"
August 26, 2021 19:47 - 21 minutes - 39.8 MBThis week, Jessica and Jeremy are joined by Dr. Jeffrey Rothstein, professor of neurology and neuroscience and the founding director of the Robert Packard Center for ALS Research at Johns Hopkins University School of Medicine, and Dr. Alyssa Coyne, a postdoctoral fellow at Johns Hopkins. Drs. Rothstein and Coyne discuss their recent publication of research identifying a cellular defect common in ALS and what it means for research into the disease going forward. To read more about t...
"Optimizing Care Through A New Partnership With VA…"
August 19, 2021 18:51 - 18 minutes - 34.5 MBThis week, Jessica and Jeremy are joined by Lori Banker-Horner, director of clinical programs at The ALS Association, 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. For more information on the partnership between the Association and the VA, go to https://www.als.org/blog/als-association-partners-veterans-administration-improve-lives-veterans-living-als To learn mo...
"Living With ALS When A Natural Disaster Hits…" [Replay]
August 12, 2021 15:00 - 35 minutes - 65.5 MBThis week's episode is a replay of one of our favorites from 2020; Mike and Jeremy are joined by Donnie Graham and Jan Steinbock, who tell us how they are facing wildfires and a global pandemic with ALS. For more information about natural disaster preparedness, read https://www.als.org/stories-news/hurricane-season-starts-today-are-you-prepared-for-an-emergency For help building your own emergency preparedness plan, check out https://www.als.org/navigating-als/resources/fyi-emerge...
"Taking the Fight Against ALS to the Halls of Congress…"
August 05, 2021 18:39 - 29 minutes - 53.8 MBThis week, Jeremy and Jessica are joined by Dr. Neil Thakur, chief mission officer for The ALS Association, and Abram Bieliauskas, associate director of government affairs for the Association. Dr. Thakur and Abram reflect on a recent congressional subcommittee hearing focused on advancing treatments and cures for neurodegenerative diseases and where the fight goes from here. To read more about the hearing go to https://www.als.org/blog/als-community-pleas-congress-faster-more-respo...
"Midyear Checkup on the Fight Against ALS…"
July 29, 2021 18:32 - 19 minutes - 36.1 MBThis 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. Learn more about the successes from the first half of 2021 at https://www.als.org/2021-mid-year-report For more on the power of one team on one mission to create one world without ALS, go to https://www.als.org/blog/...
"Summer Vacation and ALS…"
July 22, 2021 15:22 - 42 minutes - 78.6 MBWith summer travel season in full bloom, Jeremy and Jessica revisit a conversation around overcoming the challenges of living with ALS. For the latest guidance from the CDC on traveling during COVID, go to https://www.cdc.gov/coronavirus/2019-ncov/travelers/index.html For tips on traveling while living with ALS go to https://teamgleason.org/wp-content/uploads/2019/06/Flying-with-ALS_-Power-Wheelchair-and-Ventilator.pdf To know more about Jeremy Van Tress, check out https://www.wa...
"Summer Vacation And ALS…"
July 22, 2021 15:22 - 42 minutes - 78.6 MBWith summer travel season in full bloom, Jeremy and Jessica revisit a conversation around overcoming the challenges of living with ALS. For the latest guidance from the CDC on traveling during COVID, go to https://www.cdc.gov/coronavirus/2019-ncov/travelers/index.html For tips on traveling while living with ALS go to https://teamgleason.org/wp-content/uploads/2019/06/Flying-with-ALS_-Power-Wheelchair-and-Ventilator.pdf To know more about Jeremy Van Tress, check out https://www.wa...
"Drawing Inspiration from Eddie Ilarazza…"
July 15, 2021 21:19 - 9 minutes - 17.4 MBThis 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. Read more about Eddie’s story at https://www.als.org/blog/eddie-ilarraza-doing-whatever-it-takes-make-his-dreams-come-true This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s nat...
"Recruiting New Researchers to the Search for Treatments…"
July 08, 2021 20:30 - 22 minutes - 41.2 MBThis 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. To learn more about the Milton Safenowitz Postdoctoral Fellowship Program, go to https://www.als.org/research/research-we-fund/fellowships/milton-safenowitz-postdoc-fellowship-program This episode was produced by Garrett Tiedemann and is brought to you b...
"Recent Developments on Drug Development at FDA…"
July 01, 2021 21:02 - 21 minutes - 38.7 MBThis 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. Dr. Thakur discusses the agency’s recent decision to grant accelerated approval for Aduhlem, the first new drug approved for the treatment of Alzheimer’s disease and recent statements made by leaders of the FDA on the drug approval process. To read AL...
"Checking in on the Global Fight Against ALS..."
June 24, 2021 17:04 - 12 minutes - 23.4 MBThis 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. For information on the Global Day of ALS/MND Awareness go to https://www.alsmndalliance.org/global-day/ To learn more about how we are going Whatever It Takes to create a world without ALS, go to https://www.als.org/whatever-it-takes...
"Health Care Disparities and ALS…"
June 17, 2021 18:18 - 18 minutes - 33.6 MBThis week, Jeremy and Jessica are joined by Dr. Michael Cartwright, a professor of neurology at Wake Forest School of Medicine and a neurologist at Wake Forest Baptist Health. Dr. Cartwright, co-author of a study on racial differences in ALS interventions, talks about some of the racial disparities research has uncovered in the ALS journey and the need for more research to understand why. To learn more about the paper Dr. Cartwright co-authored, go to https://n.neurology.org/conten...
"Making ALS A Livable Disease By Finding New Treatments…"
June 10, 2021 19:29 - 20 minutes - 38.5 MBThis 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 with a focus on the search for new treatments and research breakthroughs that can help people live longer, improve quality of life and prevent loved one from getting ALS. To learn more about doing whatever it takes to make ALS a livable disease, go to https://www.als.org/whatever-it-takes Find more information abou...
"Next Steps in Speeding Up the Drug Development Process…"
June 03, 2021 18:37 - 28 minutes - 51.7 MBThis 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. They turn to Abram Bieliauskas, associate director of government affairs for The ALS Association, and Dave Zook, a consultant for the Association. Dave and Abram reflect on the recent We Can’t Wait Action Meeting with the FDA and lay out two promising bills recently reintroduced in Congress – the Promising ...
"Continuing to Fight for Access to Promising Treatments…"
May 27, 2021 20:34 - 25 minutes - 46 MBThis 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. Larry reflects on the meeting and where the fight for access to promising treatments goes from here. To watch the We Can’t Wait Action Meeting in full, go to https://www.als.org/advocacy/we-cant-wait To learn more about the next steps in the fight go to https://www.als.org/blog/we-cant-w...
"Managing the Financial Impact of an ALS Diagnosis…"
May 20, 2021 20:23 - 17 minutes - 32.1 MBThis 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. To learn more about the financial impact of ALS, go to https://www.als.org/navigating-als/financial-information Share one family’s journey through the financial impact of ALS at https://www.als.org/blog/als-and-financial-burdens-it-presents-families-living-disease To access the resource g...
"Every Moment Matters…"
May 13, 2021 18:46 - 18 minutes - 34.4 MBThis 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. Read more about the moments that matter to Sue at https://www.als.org/blog/my-mother-heartbeat-our-family This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dako...
"Engaging Kids in the Fight Against ALS…"
May 06, 2021 18:06 - 18 minutes - 34.5 MBThis 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. Rebecca shares the inspiration behind the Youth Challenge, a unique virtual opportunity for kids to get involved in 2021, and how the Youth Challenge is empowering kids to raise awareness of ALS. Youth Action Day is scheduled for May 15, 2021. Find ways to get kids in your neighborhood involved at https://www.als...
“Exploring the Connection Between CTEs and ALS…”
April 29, 2021 19:42 - 21 minutes - 38.6 MBThis 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. For more information about the need for more research into the connection between ALS and frequent brain injuries, go to https://www.als.org/blog/can-football-cause-als-look-research Learn more about the Concussion Legacy Foundation at https:...
"Expanding Access to Telehealth for Speech-Language Pathology…"
April 22, 2021 19:06 - 17 minutes - 31.3 MBThis 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. To learn more about the coding changes at CMS, go to https://www.als.org/blog/cms-expands-telehealth-coverage-speech-language-pathology-services-another-win-als-community Lear...
"Supporting Young Caregivers…"
April 15, 2021 16:26 - 25 minutes - 46.7 MBThis week, Mike and Jeremy get out of the way as 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. To learn more about Sarah Trott’s ALS journey, go to https://www.sandiegouniontribune.com/caregiver/news-for-caregivers/story/2021-03-16/from-caregiver-to-spokeswoman-former-bachelor...
"Walk Your Way to Defeat ALS…"
April 08, 2021 17:41 - 27 minutes - 49.8 MBThis week Mike and Jeremy are joined by David Van de Riet, a member of The ALS Association national board of trustees, and Kendra Albers, director of development at The ALS Association Greater Chicago Chapter. The 2021 spring Walk to Defeat ALS season is upon us, and we dig into the creative, innovative ways walk teams are embracing the opportunity to Walk Your Way. To find a Walk to Defeat ALS in your community, go to https://secure2.convio.net/alsa/site/SPageServer/;jsessionid=00...
"A New Season Begins in Baseball’s Longstanding Commitment to Fighting ALS…"
April 01, 2021 18:53 - 18 minutes - 33.6 MBThis 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, an annual day for Major League Baseball teams to raise awareness of ALS and deepen the long-standing relationship between MLB and the ALS community. Read more about the fight to create Lou Gehrig Day at https://www.als.org/blog/its-official-all-30-major-league-baseball-teams-endorse-league-wide-lou-gehrig-day To learn more about Lou Gehr...
"Gearing Up for Another Big Year in ALS Advocacy..."
March 25, 2021 13:30 - 20 minutes - 37.1 MBThis 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. To learn more about how you can get involved as an ALS advocate, visit als.org/advocacy Click here for additional information on The ALS Association's 2021 Public Policy Priorities For more on the life and research of Dr. Michael Bereman, click here. This episode was produced by Garrett Tiedema...
"Focusing on the Best in Patient Care in Hospital and Clinic Settings…"
March 18, 2021 18:33 - 29 minutes - 53.2 MBThis week, Mike and Jeremy recognize Patient Safety Awareness Week and turn to Leslie Ryan, director of education & professional development programs at The ALS Association for some tips on preventing medical harms in hospital settings. Mike then welcomes Lauren Brown, the nurse coordinator at the Providence ALS Center in celebration of Certified Nurse’s Day. To access medical information materials that will help health care provider tailor their care to your needs, go to https://w...
"Maintaining Good Nutrition With ALS…"
March 11, 2021 16:35 - 17 minutes - 31.2 MBThis week, Mike and Jeremy are joined by Megan Frisk, a dietician and the care services coordinator at The ALS Association Rocky Mountain Chapter. March is National Nutrition Month, and Megan serves up some helpful tips on maintaining good nutrition while living with ALS. For more information on nutritional support for people with ALS, check out https://www.als.org/navigating-als/resources/maintaining-good-nutrition-als This episode was produced by Garrett Tiedemann and is brought...
"Finding Hope on the Horizon Through ALS Research…"
March 04, 2021 23:23 - 22 minutes - 40.7 MBThis 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. To learn more about research into NU-9, go to https://eurekalert.org/pub_releases/2021-02/nu-and021921.php For more information on The ALS Association’s support for Dr. Ozdinler’s research into upper motor neurons, check out https://www.als.org/research/research-we-fund/funded-grants Read about T...
"Showing Our Stripes for Rare Disease Day…"
February 25, 2021 16:37 - 20 minutes - 37 MBThis 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. For more information on Show Your Stripes go to https://rarediseases.org/rare-disease-day/ This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and th...
"Traveling While Living With ALS…"
February 19, 2021 18:34 - 41 minutes - 75.9 MBThis 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. Stay up to date on the latest CDC guidance on travel during the COVID-19 pandemic at https://www.cdc.gov/coronavirus/2019-ncov/travelers/travel-during-covid19.html For tips on traveling while living with ALS go to https://teamgleason.org/wp-content/uploads/2019/06/Flying-with-ALS_-Power-Wheelchair-and-Ventilator.pdf To know more about ...
"Honoring International Day of Women and Girls in Science…"
February 11, 2021 20:17 - 36 minutes - 67.8 MBThis week, Mike and Jeremy commemorate International Day of Women and Girls in Science with Drs. Ericka Greene and Sandrine Da Cruz, who give us updates on their ALS research and talk about what is being done to break down barriers to recruit more women into scientific research. To learn more about International Day of Women and Girls in Science, go to https://www.un.org/en/observances/women-and-girls-in-science-day For more information about Dr. Ericka Green’s research at H...
"The Importance of Hearing From Caregivers About Their Needs…"
February 04, 2021 16:12 - 21 minutes - 20.1 MBThis 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. To learn more about the ALS Focus, go to https://www.als.org/research/als-focus To register for ALS Focus or to log in to participate in the current survey, go to https://www.neuroserver.org/als-focus/Home/login Check out the results of previous ALS Focus surveys at https:/...
"Health Care Advocacy Blueprint for the First 100 Days…"
January 28, 2021 16:00 - 14 minutes - 27.4 MBThis week, Mike and Jeremy are joined by Katie Berge, director of federal affairs at The Leukemia & Lymphoma Society and a member of the Partnership to Protect Coverage, a group of 33 patient advocacy organizations including The ALS Association. Katie walks us through the first 100 days of the Biden administration and lays out the health care fights ahead. For more information about the partnership and its 100 days agenda, go to https://www.lls.org/news/33-organizations-representin...
"A Conversation with MLB Umpire, Phil Cuzzi..."
January 27, 2021 18:05 - 10 minutes - 15.1 MBIn 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. Click here to learn more about Phil's upcoming fundraiser benefiting the ALS community. This episode was produced by Mike Stephenson and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.
"Checking in on Access to COVID-19 Vaccines…"
January 21, 2021 19:39 - 21 minutes - 38.7 MBThis 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. To stay up to date on COVID-19 vaccine access, go to https://www.als.org/navigating-als/living-with-als/covid-vaccines For more information on ROAR, go to: https://medschool.duke.edu/about-us/news-and-communications/som-magnify/bold-approach-caring-als-patients This episode was produced by Garrett Tiedemann ...
"Bringing the Five-Month Waiting Period for SSDI Benefits to an End…"
January 14, 2021 21:43 - 14 minutes - 27.1 MBThis 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, which ended the five-month waiting period for people with ALS to access Social Security Disability Insurance. To learn more about the role ALS advocates played in getting the ALS Disability Insurance Access Act passed, go to https://www.als.org/blog/als-disability-insurance-access-act To become an ALS advocate, go to https://als.quor...
"Managing COVID-19 and Social Distancing While Living With ALS..." [Replay]
December 31, 2020 16:00 - 18 minutes - 33.1 MBThis week's episode is a replay of one of our favorites from 2020; Mike and Jeremy talk to three families who share their experiences living with ALS during the COVID-19 pandemic and how they are managing social isolation and anxiety around the coronavirus. For tips on managing stress during the COVID-19 outbreak read https://alsadotorg.wordpress.com/2020/05/26/continuing-to-cope-with-anxiety-and-stress-during-these-difficult-times/ For more information about coping with the “new ...
"A Look Back on the Year in ALS Care Services…"
December 24, 2020 14:00 - 28 minutes - 52.9 MBThis 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. For more information on COVID-19 vaccines for people with ALS go to https://www.als.org/navigating-als/living-with-als/covid-vaccines Learn more about The ALS Association’s certified centers and clin...
"A Look Back on the Year in ALS Advocacy…"
December 17, 2020 16:29 - 21 minutes - 39 MBThis week, Mike and Jeremy 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. Check out The ALS Association COVID-19 vaccine information hub at https://www.als.org/navigating-als/living-with-als/covid-vaccines Sign up to become an advocate at https://als.quorum.us/register/ Keep track of the latest ALS Association advocacy prioritie...
"Exploring What We Know About the COVID-19 Vaccines…"
December 10, 2020 21:55 - 45 minutes - 84.1 MBThis week, Mike and Jeremy are joined by Dr. Clifton Gooch, chair of the University of South Florida’s Department of Neurology and a member of The ALS Association’s national board of trustees. Dr. Gooch 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. Learn more about Dr. Gooch at https://www.als.org/about-us/leadership/clifton-cliff-gooch-md Read Dr. Gooch’s piece on the long-term im...
"A Look Back on the Year in ALS Research…"
December 03, 2020 16:41 - 19 minutes - 36.4 MBThis week Mike and Jeremy 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. For more information about research funded by The ALS Association, go to https://www.als.org/research To reach out to your member of Congress about the ALS Disability Insurance Access Act check out htt...