Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…
Last November, I joined a club. I share this news with the same spirit that Groucho Marx once wrote his resignation letter to the Friar’s Club: “I don’t want to belong to any club that would accept me as one of its members.” I’m referring to the COVID-19 club.
U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating diagnoses, and improving patient care and treatment, is now in practice. This framework, signed by all four countries take make up the U.K. — England, Scotland, Wales and Northern Ireland — builds on the success…
I’ve lost two moms in my lifetime. My biological mom, Debbie, who was with me for the first 23 years of my life, passed away in 2011 after a 15-year battle with Huntington’s disease (HD). When she was diagnosed, we learned about the progression that inevitably would lead to…
It’s all about the mindset. I suggest caregivers work on developing a positive mindset. It makes life much easier and more joyful. For instance, waiting in line is not fun for me. But I have learned to pray while I wait. What used to be annoying is now positive.
Hi, 2021. How are you? You have much to live up to. Last year, a pandemic carpet-bombed its way into our lives. As a result, it woke many people up. Families cooped up together spent more time with one another. Life in the fast lane slowed down a bit.
Whoever named Operation Warp Speed, the U.S. government’s project to produce and develop COVID-19 vaccines safely and effectively, got it right. In doing research for this column, I came across words like “unprecedented” and “breakneck” to describe not only how fast it took a vaccine to be approved, but…
I have only known one way to live in a family affected by a rare disease, specifically Huntington’s disease (HD). That way is not to sit back and wait for HD to come, but rather to seek it out and attack! I don’t mean attack in a physical sense, of…
Thick rubber bands seem unbreakable. It takes effort to pull each end. In contrast, breaking a thin rubber band takes little effort. This is how my wife, Jill, summarized the current state of the world the other day. It seems like we all start out as…
So … December is finally here. It’s the last month of the longest year ever, as far as I’m concerned. As I write this, it’s extremely cold and gray outside. Oh, sun, where are you? Warm weather, where are you? End of the pandemic, where are you? The holidays…
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