Columns

Got Questions About Joining a Huntington’s Clinical Trial?

There is a robust pipeline of potential therapies for Huntington’s disease (HD), which I’ve discussed in previous columns. All of the current and future clinical trials provide real hope for this community. However, people typically aren’t allowed to participate in two clinical trials at the same time, and…

NORD’s Caregiver Respite Program Continues Through Pandemic

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…

No Matter Your Hardships, Today Is a Great Day to Be Alive

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…

As Caregivers, We Can Choose a Positive Mindset

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.