We developed The Joel Goldhirsh ALS Home and Daily Living Guide in close collaboration with ALS experts and families impacted by the disease. After gathering initial input on what the guide should address, we filmed videos, wrote the text, and received extensive feedback and edits from collaborators.

Our goal was to create a practical, how-to guide that institutionalizes knowledge and best practices from ALS professionals and integrates the lived experiences and perspectives of families.

Joel and Karen Goldhirsh

This guide would not have been possible without the support, guidance, and input from Joel and Karen Goldhirsh. While we were in the early stages of developing this guide, Joel and Karen reached out to share their vision of creating a training guide for paid caregivers and home health aides, both of whom are often unprepared to meet the needs of their ALS clients.

We merged our visions to create a guide that would empower both family and paid caregivers with the knowledge, skills, and resources they need to provide the best care possible. In addition to inviting us to film in their Denver home for two days, Joel and Karen raised funds to help support the creation and promotion of this guide.

We are grateful to Joel and Karen for their collaboration, openness to share their story, and desire to help other families experience a better quality of life.

ALS Hope Foundation

This guide would not have been possible without the collaboration and support of the amazing ALS Hope Foundation team. Every member of Dr. Terry Heiman-Patterson’s team at the MDA/ALS Center of Hope at Temple University has been working with ALS patients for at least 15 years.

The ALS Hope Foundation team not only invited us to Philadelphia to film for two days, they carefully reviewed all guide text and provided detailed feedback. We would like to extend a heartfelt thank you to:

  • Terry Heiman-Patterson, MD
  • Jamey Piggott, Executive Director
  • Sara Feldman, PT, DPT, ATP
  • Mary Paolone, MSRN
  • Mark Goren, MS, OTR/L, CHT
  • Donna Harris, MA, CCC
  • Latoya Weaver, PSC

Guide Collaborators

We also received invaluable content input and feedback from a variety of collaborators across the ALS community. We would like to thank the following individuals for taking the time to meet, share insights and expertise, answer questions, and review text.
  • Matt Wild, U.S. Veteran living with ALS and Founder of Matt’s Place Foundation
  • Theresa Whitlock-Wild, ALS caregiver and Project Manager for the Adaptive Technology Center at the Steve Gleason Institute for Neuroscience
  • Todd and Laurie Kelly, retired teacher living with ALS and ALS caregiver
  • Amy Swartz Ellrodt, PT, DPT, The Healey Center for ALS
  • Katherine Burke, PT, DPT, NCS, The Healey Center for ALS
  • Claire MacAdam PT, NCS, The Healey Center for ALS
  • Joyce A. Khowdee, OTD, OTR/L, Center for Restorative Neurology at Loma Linda University Medical Center
  • Laura Good, DPT, PT, NCS, Duke ALS Clinic
  • Melissa Werz, OTD, OTR/L, Duke ALS Clinic
  • Stacey Asnani, MSW, LCSW, Duke ALS Clinic
  • Moriah Kane, OTR/L, ATP, Care Services Manager, The ALS Association
  • Aditi Narayan Minkoff, MSSW, Director of Community Support,  I AM ALS
  • Elizabeth Auguilar, Home Health Aide
  • Vicky Oren, Home Health Aide

ALS HOME AND DAILY LIVING GUIDE

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