For over 20 years, Christa has been a champion in the fight against Huntington's Disease, tirelessly dedicating her time and energy to research in hopes of creating a better future for others. Her mother, grandmother, great-grandmother and uncle all had and died from HD, so she knew there was a chance she would have it also. She has also had many friends she made throughout the years at various HD support groups pass away as well. Her journey began by accompanying her mother to Predict HD, a long-term observational study tracking the progression of Huntington's Disease, which has since evolved over the years into EnrollHD. Even before her own diagnosis, Christa selflessly supported her mother, traveling with her to research facilities at UCLA, UCI, The Cleveland Clinic in Las Vegas, and even Columbia University in New York. Christa was fortunate to either live near these facilities at the time, or the research groups would help with the cost of transportation because of the rarity of the disease and those affected by it.
I remember those early days, witnessing Christa's unwavering commitment to finding a cure, a commitment fueled by witnessing her mother's struggle with the disease. Even as someone "at risk," Christa actively participated in the study. I recall countless hours spent at research facilities, where Christa patiently endured extensive interviews, meticulously testing her cognitive and motor skills. She bravely underwent blood draws and MRIs, all in the name of advancing Huntington's research.
Christa's dedication extends beyond the research lab. She's an active member of Huntington's support groups, sharing her experiences and offering encouragement to others while learning from their journeys as well.
Her involvement with DeSales University, where she attends physical therapy, has taken on an unexpected teaching role as it were. Christa's unique dual diagnosis of Huntington's and Multiple Sclerosis presents a rare learning opportunity for physical therapy students. By working with Christa, they gain firsthand experience in adapting treatment plans and understanding the complexities of these conditions. The knowledge they gain from Christa will undoubtedly help them better serve their patients in the future.
Christa's unwavering commitment to Huntington's research is an inspiration. Her contributions, both big and small, are paving the way for a brighter future for those affected by this disease. She faces her own challenges with incredible strength and grace, yet her focus remains on helping others. Even as we speak, she has finalized the documentation to donate any organs, up to and including her entire body, if necessary, to the university if it will help them learn more and save others. I am incredibly proud to be her husband and witness her extraordinary dedication to making the world a better place. Below are some results from the one of the studies Christa took her mother to, and that Christa and other selfless individuals who suffer from Huntington’s have been a faithful participants of:
· Early disease markers:
The study identified several clinical and neuroimaging markers that could potentially be used to detect the early stages of Huntington's disease, including subtle motor abnormalities, cognitive impairments, and changes in brain structure. This will potentially help doctors diagnose HD in patients sooner.
· Pre-symptomatic phase:
Participants with the Huntington's disease gene who were not yet showing clinical symptoms exhibited measurable changes in their neurological function, suggesting a long pre-symptomatic phase. This will also potentially help doctors diagnose HD in patients sooner.
· Time to diagnosis:
The study was able to estimate the time until a clinical diagnosis based on the progression of these early markers, indicating that the disease process may begin significantly before a diagnosis is made.
· Importance for clinical trials:
The Predict-HD study provided valuable information for designing clinical trials aimed at preventing or slowing the progression of Huntington's disease by enabling researchers to identify individuals in the early stages of the disease.
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