Fargo, North Dakota-based Sonjia Anderson has struggled with Huntington’s disease since 2016, but has experienced improvements since participating in a Denver, Colorado-based clinical trial at Rocky Mountain Movement Center with Principal Investigator Rajeev Kumar. And like many residents in Fargo-Moorhead area, she volunteers time to give back—in this case, she is helping to organize the second annual Hounds for HD Dog Walk, which is raising money for the Huntington’s Disease Society. Eight months into the Clinical Trial for Roche’s RG6042, she is noticing a big difference.
Emma Vatnsdal of the West Fargo Pioneer reports that Huntington’s Disease, a neurological condition, affect’s the physical and mental abilities of patients such as Sonjia.
Facial Movements Part of a Genetic Scheme
Ms. Anderson shared, “For me, it was my facial movements,” and noted, “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 is one of the key biomarkers.”
Huntington’s disease is a genetic disease, meaning that the disorder is presented on the chromosomes, meaning children with the gene have a 50% chance of getting the disease. Sonjia reported that her dad had the disease.
In a sad but real statement she conveyed to the local paper, “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 think God very much for getting me through those tough times.”
Clinical Trial at Rocky Mountain Movement Center, Denver
Sonjia had been keeping track of various clinical trials announcements and heard of a study in Denver at Rocky Mountain Movement Center. Sonjia and her mom went down to Denver and learned how to apply for a clinical trial. It seemed to make sense to go for it. They filled out the application at the clinical investigational site, and the next day they received a phone call from the patient enrollment recruiter for an initial pre-screening.
Ms. Anderson started the study at Rocky Mountain Movement Center with a dull day of testing: electrocardiogram, urine samples, measurements of her blood pressure, weight and height, and an eye test followed by an hourlong MRI. A week later, she learned she was accepted by the study—she would begin receiving monthly spinal injections to help curb the progression of HD.
The Clinical Trial is Working
Eight months into the study, Anderson reports she is noticing a big difference. Although the injections are investigational (e.g. trial phase and not approved by the FDA), Anderson is hopeful and optimistic. The placebo was recently removed from the study, ensuring that the investigational medicine is working. Rocky Mountain Movement Center is a study site for Roche’s Phase III GENERATION HD1 study focusing on the promising investigational product called RG6042.
Giving Back to Family and Generations
Sonjia Anderson knows that participating in a clinical trial is not only addressing her possible cure but also her family’s and generations thereafter. After all, in this Huntington’s disease journey, she has met many people she cares about. It is about something bigger than self. And she will be raising money at the “Hounds for HD Dog Walk” this Thursday, September 5, at Rheault Farm in Fargo, ND.
The Clinical Investigator Site: Rocky Mountain Movement Center
This center conducts a large number of clinical research studies jointly with the Colorado Neurological Institute. As Medical Director, Rajeev Kumar, MD, is conducting research involving hyperkinetic movement disorders, such as Huntington’s Disease and Dystonia as well as Hypokinetic movement disorders, including Parkinson’s Disease and Progressive Supranuclear Palsy (PSP). Their research includes independent, single-center studies, NIH-sponsored and pharmaceutical-sponsored multi-center clinical trials.
Call to Action: Do you have a loved one with a Huntington’s Disease Diagnosis that is in the Colorado area? Consider a visit to Rocky Mountain Movement Center. Also sponsors seeking new principal investigators for central nervous system investigational treatments should also consider contacting Dr. Kumar.