Connecting ALS

This 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 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 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 The ALS Association’s support for Dr. Stanley Appel’s research into regulatory T-lymphocytes at https://www.als.org/blog/als-association-als-finding-cure-and-mda-co-fund-clinical-trial-grant-study-restoring-immune

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 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 the Association’s Minnesota/North Dakota/South Dakota Chapter. 

This 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 Jeremy Van Tress, check out https://www.waldenu.edu/programs/resource/walden-military-pride-meet-jeremy-van-tress

Learn more about Accessible Go at https://accessiblego.com/home

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 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 Houston Methodist go to https://www.houstonmethodist.org/faculty/ericka-p-greene/

Read about Dr. Sandrine Da Cruz’s research at VIB-KU Leuven Center Brain and Disease Research at https://cbd.vib.be/labs/da-cruz-lab

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 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://www.als.org/research/als-focus/survey-results

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 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-representing-millions-of-patients-urge-policymakers-to-adopt-patient-first-policy-agenda?news=News%20Releases&newsid=12355

Learn more about The ALS Association’s call for a boost in federal funding of ALS research here https://www.als.org/blog/boost-funding-needed-als-research-year

Stay up to date with The ALS Association’s advocacy priorities at https://www.als.org/advocacy/our-priorities

Sign up to become an advocate at https://als.quorum.us/register/

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, 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. 

This 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 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 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.quorum.us/register/

To revisit our earlier conversation with Alaska Senator Lisa Murkowski, go to https://www.connectingals.org/episodes/digging-into-the-act-for-als

Keep up with The ALS Association’s legislative priorities at https://www.als.org/advocacy/our-priorities

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.