Please participate in a survey on your Huntington’s clinic visits

My family has a running list of sayings I’m officially banned from using at home. Apparently, tossing out cheesy phrases multiple times a day is grounds for an intervention — at least according to my wife, Jill, and our daughter, Alexus.

But for this column, I’m breaking the rules because nothing fits our journey better than the cliché “teamwork makes the dream work.”

If you ask Jill, she’ll tell you that teamwork took on a whole new meaning for us in 2018, the year our lives were forever changed by her Huntington’s disease diagnosis.

Since then, Jill and I have met some impressive advocates for Huntington’s disease families like ours, and we’ve come to see them as members of our team. They’ve been affected by the devastation Huntington’s leaves in its wake and are working hard to educate and give voice to those who have quietly attended medical appointments that have left them wondering if that’s all there is.

So when I received a text from one of our teammates, Seth Rotberg, a longtime gene-positive patient who’s part of a group of Huntington’s advocates called HD-PACE, asking me to share a survey they created on clinic experiences, I couldn’t say yes fast enough.

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After we looked over the survey, Jill said, “We understand the importance of feeling comfortable with our healthcare team, especially with my sensory issues, so if sharing what we’ve been through helps another family feel more prepared or hopeful, then I’m all in.”

The survey — the Huntington’s Disease Clinic Rating Survey — is designed to gather honest, anonymous feedback from patients and caregivers about their clinic experiences. It’s a chance for the community to highlight clinics that provide compassionate, expert, and accessible care and to point out where improvements are needed.

If you or someone you care for has visited a Huntington’s clinic in the past two years, you can help by completing the survey. Whether your visit was for a routine appointment or participation in a clinical trial or research study, your input matters. Caregivers are welcome to participate, too. The survey asks about experiences with genetic testing, accessibility, support services, and overall quality of care.

You can fill out a separate survey for each clinic you’ve visited, which takes about 15 minutes to complete. Participation is voluntary and completely anonymous unless you choose to provide contact details. You can stop at any time before submitting, and no personal information will be shared.

For our family, honest feedback and the collective wisdom of our community have been a lifeline. Jill’s grace and my insistence on sprinkling puns into every conversation have helped us cope, but ultimately, it’s the shared stories and support from others living with Huntington’s that create real change.

If your experience can help one more family feel less alone or more hopeful, why not share it? Try the link we’ve added above.

“Getting good care isn’t just about medication,” Jill said. “It’s about being treated with dignity and having staff see me as more than my symptoms. That’s what makes a difference.”

Please share your story and pass this on to everyone you know who has been touched by Huntington’s and help make clinics places of hope, healing, and teamwork.

And if by sharing you help at least one family celebrate a small win — or heaven forbid, laugh at one of my puns — then maybe teamwork really does make the dream work.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.