Connecting ALS

On this week’s episode, Mike and Jeremy talk to Dr. Merit Cudkowicz, chief of neurology at Massachusetts General Hospital and director of the Sean M. Healey & AMG Center for ALS, about the impact of COVID-19 on conducting clinical trials. Dr. Cudkowicz also provides an update on the Healey Platform Trial and potential long-term changes to trial design.

To learn more about Dr. Cudkowicz, go to https://www.massgeneral.org/doctors/16904/merit-cudkowicz

Read all about the Healey Platform Trial at https://alsadotorg.wordpress.com/2020/01/17/in-case-you-missed-it-the-als-association-invests-3-million-in-first-ever-als-platform-trial-to-speed-up-clinical-trial-process/

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. Melinda Kavanaugh, a clinical social worker and associate professor at the University of Wisconsin-Milwaukee, about the impact ALS has on kids, teenagers, and young adults. Dr. Kavanaugh discusses her research talking to kids about the roles they play as caregivers and ways to empower children in families affected by ALS.

To learn more about Dr. Kavanaugh, check out her university bio https://uwm.edu/socialwelfare/people/kavanaugh-phd-lcsw-melinda-s/

To access the books Dr. Kavanaugh wrote for kids, teenagers, and young adults impacted by ALS, go to http://www.alsa.org/als-care/resources/publications-videos/youth-education/

To take the ALS Youth Challenge, go to http://www.alsa.org/fight-als/youth-challenge/

To learn about Sydney Carroll’s Youth Challenge fundraiser, go to https://alsadotorg.wordpress.com/2020/05/12/challenging-our-youth-to-join-the-fight-against-als/#more-6730

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 Betsy McCormick and Maya Bulmer about how their family is adjusting to life since Betsy was diagnosed with ALS in 2019, their Mother’s Day plans, and how they developed a new mother-daughter tradition.

For more on Maya and Betsy’s story, check out https://alsadotorg.wordpress.com/2019/11/08/maya-bulmer-today-is-what-we-have/

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 Mark Calmes, vice chair of The ALS Association Board of Trustees, about the Jane Calmes ALS Scholarship Fund, which is currently accepting applications from people affected by ALS who wish to pursue college degrees or vocational certificates. Last year, the scholarship fund awarded $225,000 to 45 students across the country. One of those students is Ryan Pogemiller, a student at Arizona State University. Ryan and his mom, Allison, join to discuss how ALS impacted their life and how the Jane Calmes ALS Scholarship Fund is helping Ryan honor his father’s legacy.

To learn more about the Jane Calmes ALS Scholarship Fund, read http://www.alsa.org/fight-als/calmes-als-scholarship-fund/

Click here to donate to the Jane Calmes ALS Scholarship Fund https://secure2.convio.net/alsa/site/Donation2;jsessionid=00000000.app20096a?df_id=39255&mfc_pref=T&39255.donation=form1&_ga=2.226991709.1756288973.1588190032-349483217.1580497749&NONCE_TOKEN=1B41CDAF669428FD6B5B9631D50C7A84

Read about the inaugural class of the Jane Calmes ALS Scholarship Fund here https://alsadotorg.wordpress.com/2019/09/19/inaugural-class-of-the-jane-calmes-als-scholarship-fund-hails-from-25-states/

As mentioned at the beginning, listen to ALS Association President and CEO Calaneet Balas talk about managing during a crisis on the Business of Giving https://denver-frederick.com/2020/04/23/als-association-ceo-on-managing-through-a-crisis/

As a reminder, May 10 is Mother's Day and we've been thinking it would be great to share some amazing stories of moms in a special episode. Simply record it using a voice memo app on your phone and e-mail it to [email protected]. We'll collect these stories together and share some of them on our Mother's Day episode, which will come out on May 7th.

For quick instructions to record a voice memo visit: http://webmn.alsa.org/site/DocServer/How_to_record_a_voice_memo__Connecting_ALS_.pdf/428545705?docID=136253&verID=1

Find a transcript of this episode on Tumblr.

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. 

May 10 is Mother's Day, so after you call the florist and get flowers ordered, grab your phone and share a reflection about moms and ALS. Simply record it using a voice memo app on your phone and e-mail it to [email protected]. We'll collect these stories together and share some of them on our Mother's Day episode, which will come out on May 7th.

For quick instructions to record a voice memo visit: http://webmn.alsa.org/site/DocServer/How_to_record_a_voice_memo__Connecting_ALS_.pdf/428545705?docID=136253&verID=1

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 celebrate National Volunteer Week by exploring some of the creative ways volunteers are continuing to serve the community despite the challenges of social distancing and some of the long-term trends in volunteering. They are joined by Sarah Lettow, engagement coordinator for The ALS Association Iowa Chapter, and Dr. Nathan Dietz, a research scholar at the Do Good Institute in the University of Maryland’s School of Public Policy.

Learn more about the Do Good Institute here: https://dogood.umd.edu/

For more of a specific look at their research publications visit: https://dogood.umd.edu/research-impact/publications

For information on how to volunteer in your community, contact your local ALS Association chapter here: http://www.alsa.org/community/

To read the Do Good Institute’s analysis of trends in philanthropy and volunteerism, click here: https://dogood.umd.edu/research-impact/publications/where-are-americas-volunteers

To learn more about some of the challenges COVID is creating for volunteerism, read this piece in the Chronicle of Philanthropy (paywall): https://www.philanthropy.com/article/Big-Changes-Lie-Ahead-for/248335

Find a transcript of this episode soon on Tumblr.

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. 

On this episode, Mike and Jeremy talk to Dr. Barron Lerner, a medical doctor and director of the undergraduate bioethics curriculum at New York University’s Langone Health, and Dr. Neil Thakur, chief mission officer at The ALS Association. The conversation covers health care scarcity and rationing during the COVID-19 pandemic, historical examples of bioethics and what they can teach us about the current health care crisis, and what people living with ALS can do to prepare for their immediate and future health care needs.

For more information about Dr. Barron Lerner, read https://med.nyu.edu/faculty/barron-h-lerner

To read Dr. Lerner’s historical study of ethical challenges faced by health care practitioners read https://www.ncbi.nlm.nih.gov/pubmed/27802464?otool=nynyumlib&myncbishare=nynyumlib

Department of Health and Human Services guidance on nondiscrimination in the health care system can be found here: https://www.hhs.gov/about/news/2020/03/28/ocr-issues-bulletin-on-civil-rights-laws-and-hipaa-flexibilities-that-apply-during-the-covid-19-emergency.html

Find resources available to empower you to make informed decisions about your health care here https://alsadotorg.wordpress.com/2020/04/08/tips-to-help-the-als-community-plan-ahead-during-the-covid-19-pandemic/

The CDC recommends creating a plan for your household and community during the COVID-19 pandemic. Learn more here: https://alsadotorg.wordpress.com/2020/04/08/tips-to-help-the-als-community-plan-ahead-during-the-covid-19-pandemic/

Find a transcript of this episode on Tumblr.

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. 

Welcome to Connecting ALS. In this episode we talk to Dr. Manish Raisinghani, president and CEO of Target ALS, about conducting research during the COVID-19 pandemic, the recent kick off of a collaboration with The ALS Association to look for biomarkers, and the important role of collaboration in ALS research.

For more information on Target ALS visit: http://www.targetals.org/

To learn more about The ALS Association partnering with Target ALS to discover #ALS biomarkers check out the blog here: https://alsadotorg.wordpress.com/2020/03/19/target-als-and-als-association-announce-new-tdp-43-focused-biomarker-initiative/

For more information about collaboration in ALS research and the search for biomarkers visit: http://www.alsa.org/research/our-approach/

Find a transcript of this episode on Tumblr.

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. 

On this episode of Connecting ALS, Mike and Jeremy talk to Lauren Tabor Gray, Ph.D., CCC-SLP, a clinical researcher and speech pathologist and co-director of the Phil Smith Neuroscience Institute in Ft. Lauderdale, Florida. Dr. Gray discusses the increasing use of telehealth to treat patients in a time of extreme social distancing brought on by the COVID-19 pandemic. She also gives insight on providing clinical care for people dealing with the onset of speaking and swallowing challenges as their disease progresses, and an update on clinical research.

To learn more about recent changes to Medicare rules expanding access to telehealth, check out https://alsadotorg.wordpress.com/2020/03/20/medicare-coverage-for-telehealth-visits-expanded-during-covid-19-pandemic/

You can also learn more about access to telemedicine at http://www.alsa.org/assets/pdfs/association-weekly-docs/medicare-telemedicine_factsheet.pdf

To better understand swallowing challenges and managing nutrition read http://www.alsa.org/assets/pdfs/living-with-als-manuals/lwals_08_2017.pdf

For more information on the platform trial Dr. Gray mentioned visit https://alsadotorg.wordpress.com/2020/01/17/in-case-you-missed-it-the-als-association-invests-3-million-in-first-ever-als-platform-trial-to-speed-up-clinical-trial-process/

For the article Dr. Plowman wrote in 2014 that Dr. Gray references visit https://dysphagiacafe.com/2014/10/23/nutrition-and-feeding-tube-placement-for-people-with-als-best-practice-in-clinical-decision-making/

Find a transcript of this episode on Tumblr.

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. 

In this bonus episode, we check-in with Calaneet Balas, President and CEO of The ALS Association, to discuss the impact of the ongoing pandemic on the ALS community.

If you have questions about the COVID-19 pandemic or how The ALS Association is continuing to pursue its mission, please email [email protected].

Find your local chapter contact info by visiting: http://www.alsa.org/community/

For answers to some frequently asked questions, check out https://alsadotorg.wordpress.com/2020/03/23/questions-and-answers-about-covid-19-and-its-impact-on-people-with-als/

Find a transcript of this episode soon on Tumblr.

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.