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When Myna Stroth was diagnosed with ALS in 2013, our family did everything we could to support her. We drove her to clinic visits, took notes, asked questions, researched care options, and tried to help with her equipment needs and other day-to-day logistics.
But every time we thought we had something figured out, her needs changed. We were a well-organized family with amazing support from the local ALS Association chapter, and we were still scrambling to try to provide the support she needed. There was so much to learn, so many details to coordinate... |
Myna with her brother, Tom, in 2011
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After Myna passed away in 2015, we started reflecting on the entire experience. Surely other families were struggling to figure out many of the same things we had just learned. During such a stressful and overwhelming experience, it is so hard to find the time and mental space to track down information about all of the everyday things you need to know.
When we heard that Myna’s wonderful Director of Care Services, Kim Hughes, was leaving The ALS Association after 12 years, we approached her about creating a practical, user-friendly website for families facing similar challenges. Kim was full of ideas and eager to share her expertise. She had such a wealth of knowledge that colleagues had suggested she write a book.
After a year of brainstorming, organizing, writing, and editing, we launched Your ALS Guide in August 2017. We continue to actively update the website and add new content in collaboration with ALS professionals across the country.
We hope this website will help answer your questions, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.
When we heard that Myna’s wonderful Director of Care Services, Kim Hughes, was leaving The ALS Association after 12 years, we approached her about creating a practical, user-friendly website for families facing similar challenges. Kim was full of ideas and eager to share her expertise. She had such a wealth of knowledge that colleagues had suggested she write a book.
After a year of brainstorming, organizing, writing, and editing, we launched Your ALS Guide in August 2017. We continue to actively update the website and add new content in collaboration with ALS professionals across the country.
We hope this website will help answer your questions, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.
