Portraits of giving: Inspiration, advocacy arise from family's burden
Judy Roberson knows all too well why a cure, or even effective treatments, for Huntington's disease (HD) must be found soon – very soon. Her family's life depends on it.
The devastating effects of the disease altered her life and the lives of her four children forever. She lost her devoted husband, Tim, in 2003 at age 51 from HD, three years after his older brother, Joe, died at age 52 in 2000. The men's mother died when she was only 55. In the Roberson family today, one member is ill from Huntington's disease and 17 other family members are at risk of developing the hereditary, degenerative brain disorder for which there is only palliative care, but no cure.
In people with HD, a gene produces an abnormal protein that begins to kill brain cells in middle age. The loss of these cells slowly robs a person's ability to walk, talk, think and reason. There is a gradual deterioration over 10 to 25 years, leading to total incapacitation and death.
"When Tim's mom died in 1978, I thought for sure if he got sick there would be some cure for him," Roberson recalls. "When research accelerated and they found the HD gene in 1993, I thought there would be a cure for Tim, but there wasn't a thing different. Today, we still have nothing that will shorten the disease or delay its onset — just medications for symptoms. There just has to be more for families facing what we face. It can't just be a death sentence."
As president of the Joseph P. Roberson Foundation, named for her brother-in-law, and president of the Northern California Chapter of the Huntington's Disease Society of America, Roberson is a one-woman powerhouse fighting HD. She and members of the Roberson family have raised thousands of dollars for research and for care and support programs for those living with HD and their families.
Supporting research, outreach
In January, Roberson presented a $35,000 check from the Roberson Foundation to UC Davis Health System, bringing the foundation's total donations since 1992 to more than $500,000 for HD research and the HD clinic. Roberson's crusade began in earnest in 1996 when she met UC Davis neurologist Vicki Wheelock. The meeting eventually led to an agreement by the Roberson Foundation and later by the Charles and Margaret Pue Charitable Trust to underwrite much of the cost of establishing and operating the UC Davis HD clinic, which began in 1997. The funding enabled Wheelock to recruit nurse practitioner Teresa Tempkin to co-direct the clinic in 1998.
While it began with only eight patients, the clinic now helps 200 patients cope with the disease. The team offers genetic testing and counseling, prescribes medications and therapies, and connects patients with support groups. Nearly half of the clinic's patients are enrolled in clinical trials.
The Roberson family's advocacy "led to this huge clinic being started and succeeding," says Wheelock, an associate professor of neurology.
"No person I've met before or since is as effective an advocate for HD families as Judy. What amazes me is she was a caregiver for her husband and family, and even in the darkest moments, she was also reaching out to other HD families with empathy and compassion."
Roberson says her efforts on behalf of HD patients and families are far from over.
"There are 1,300 people with HD and another 6,500 at risk in Northern California. There's a lot of work left to be done, but with the willingness of Dr. Wheelock and UC Davis, we can make a difference in the lives of HD families."