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.

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 guides referenced in this discussion, check out https://www.als.org/navigating-als/resources/living-als-resource-guides

For more information on caregiver burnout, go to https://www.als.org/navigating-als/resources/fyi-coping-burnout

Read about the Jane Calmes ALS Scholarship Fund at https://www.als.org/blog/now-accepting-applications-jane-calmes-als-scholarship-fund-launches-year-three

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 Dakota Chapter. 

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.

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 Dakota Chapter. 

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. 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.org/get-involved/als-youth-challenge

To learn more about the ALS Youth Challenge, go to https://www.als.org/blog/challenging-youth-join-fight

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 Dakota Chapter. 

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.

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://concussionfoundation.org/

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 Dakota Chapter. 

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.

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

Learn more about The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities

For more information about efforts to permanently expand access to telehealth, read https://www.als.org/sites/default/files/2021-03/ALS%20Association%20Statement%20-%20The%20Future%20of%20Telehealth_FINAL.pdf

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 Dakota Chapter. 

This 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-contestant-speaks-out-for-als

If you are a caregiver and want to join Sarah’s caregiver community on Facebook, go to https://www.facebook.com/groups/144164414015354?modal=false&should_open_composer=false

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

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 Dakota Chapter. 

This 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=00000000.app20094b?NONCE_TOKEN=EE901DDCE5B0CC95F80447FAF582602E&pagename=WLK_landing

To learn more about how the Walk to Defeat ALS will encourage participants to Walk Your Way, go to https://www.als.org/blog/walk-defeat-als-continues-march-safely-spring

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 Dakota Chapter. 

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, 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 Gehrig and the history of ALS, go to https://www.als.org/understanding-als/lou-gehrig

Check out a biographer’s reflections on Lou Gehrig’s legacy at https://www.als.org/blog/biographer-reflects-lou-gehrigs-legacy

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 Dakota Chapter. 

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.

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 Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. 

This 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://www.als.org/navigating-als/resources/medical-information-materials

To hear more from Lauren Brown on the role nurse coordinators play on the multidisciplinary care team, go to https://www.youtube.com/watch?v=sKJDT5qHWJA

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 Dakota Chapter.