FARGO — Moving and grooving for a cause is nothing new to residents in the Fargo-Moorhead area, home to several annual walks, runs and everything else to raise money for nonprofits, medical research and more.
But for a few people in the area, movements — especially involuntary ones — are cause for concern.
For Sonjia Anderson, a Fargo native living with Huntington's disease (HD), life is getting a little better each month, thanks to a clinical trial out of Denver, Colo., that's bringing the prospect of a cure closer than ever.
She's also helping to organize the second annual Hounds for HD Dog Walk, which will raise money for the Huntington's Disease Society of America from 5:30-7:30 p.m. Thursday, Sept. 5, at Fargo's Rheault Farm, 2902 25th St. S. The event will feature a dog walk, silent auction items and more.
HD, a neurological condition, affects people's physical and mental abilities.
"For me, it was my facial movements," Anderson said. "I was aware that I had a lot more movement of my face and in my body. My voice diminished greatly and also my mood. That's one of the key biomarkers."
Anderson was diagnosed with HD in 2016, but she knew about her risk potential long before that. The genetic disorder is presented on the chromosomes, meaning children with the gene have a 50% chance of getting the disease.
"We all knew there was something wrong with my dad," Anderson said. "He was the kindest, most gentle man, and then all of a sudden he was screaming at my mom and that became a routine."
HD affects the way people walk, talk and think. Cognitive issues can present themselves in people with the condition as difficulty in learning new information, a tendency to get stuck on a thought or action, lack of impulse control (resulting in outbursts of anger or acting without thinking) and lack of awareness of behaviors and abilities.
"(My dad) retired at 65, just to give you an idea of how late in his life he was when we got the unbelievable diagnosis of HD," Anderson said. "I was considered 'at risk' when my dad was diagnosed. I made a pact that I would be tested as soon as a potential cure was announced, and that timeline came very close to fruition."
Both Anderson and her brother have HD, and symptoms can become increasingly pronounced as the disease progresses.
"I always prayed for a cure from the time my dad was diagnosed and my brother was diagnosed and I was diagnosed," she said. "That was hard for me. I was a single mom and I lost my job, then my second job and my third job. I thank God very much for getting me through those tough times."
While living with her daughter, Kellie, in a north Fargo house, Anderson said she decided she needed to make some changes. The two sold Anderson's house in 2015 and moved in with her mom and dad to help them — but also figure out the changes happening in her own body at the time.
While medications are available to help manage the symptoms, treatments can't prevent the physical, mental and behavioral decline associated with the condition.
Until researchers in Denver got to work.
"A potential cure was announced on my brother's birthday (in 2017) and that was the sign I had been waiting for," Anderson said. "I decided I needed to keep up on all the announcements (of clinical trials). My mom and I went to the Rocky Mountain Movement Center in Denver and read through how to apply for the trial because that was the first one we saw and I had lived in Denver before, so it seemed like a logical choice."
Anderson and her mother, Claudia, filled out the application and sent it off. The next morning, they received a phone call from the recruiter and did an initial pre-screening.
Anderson had an initial consult with the team on Jan. 18, 2019, which included a full day of testing — everything from an electrocardiogram, urine samples, measurements of her blood pressure, weight and height, and an eye test, followed by an hourlong MRI. After a week of waiting, Anderson learned she was accepted into the trial and would begin participating, receiving monthly spinal injections to help curb the progression of HD.
Now, more than eight months into her role in the clinical trial, Anderson said she has noticed a huge difference.
"It's like I got a new pair of glasses," she said. "My foggy brain is gone. My depth perception is back, I don't run into cupboards getting cups, my walking is straight, talking is improving — all of these things can be confirmed by my mom who joined me in my clinical trials."
While the injections are still in the trial phase, Anderson remains optimistic. It was recently announced the placebo would be eliminated from the rounds of injections, ensuring that whatever is in the medicine itself is working.
"It's such a fitting ending for this journey for our family," Anderson said. "And to think I am helping with a cure for HD, and it's not just my immediate family, daughter Kellie, but it's so many others that I've gotten to know."
If you go
What: Hounds for HD Dog Walk
When: 5:30-7:30 p.m., Thursday, Sept. 5; walk begins at 6:30 p.m.
Where: Rheault Farm, 2902 25th St. S., Fargo
Info: The second-annual event includes a dog walk, silent auction items for pooches and owners, a memory wall, photos, contests and games for kids and more. $25 for individual walkers and $40 for families, and dogs are free and receive a bandana for participating; www.fargodogwalk.com or email FargoDogWalk@gmail.com