By Loni Nannini
Whether golf is your game or walking is your recreation of choice, it’s easy to find a local charity event this fall that moves you — both physically and emotionally.
Walkers can start with the Tucson Team Hope Walk hosted by the Arizona chapter of the Huntington’s Disease Society of America (HDSA) at 9 a.m. Saturday, Oct. 26, at Reid Park, 900 S. Randolph Way.
“Many people haven’t heard of Huntington’s disease, but if we can bring recognition to it, we will be able to raise money for research and hopefully save lives,” said Evelynn Garcia, a member of the board of directors of the Arizona chapter of the HDSA and coordinator of the walk for the past seven years. “Huntington’s is such an ugly disease. It is said to be like having the symptoms of Alzheimer’s, Parkinson’s disease and ALS all combined.”
Garcia became involved in the effort after her niece and nephew, Jasmine and Chris Moore, were diagnosed in 2010 with the juvenile onset form of the fatal genetic disorder that causes the progressive degeneration of nerve cells in the brain. The children’s mother, Ernestine Nogales, felt helpless; their father, Chris Moore, had also been recently diagnosed. He succumbed to Huntington’s disease in 2015 at age 42.
“The sad thing is that each child of a parent with Huntington’s has a 50/50 chance of inheriting the gene that causes the disease. My sister and her husband only had two kids and both of them got it,” said Garcia.
Jasmine and Chris are among more than 5,000 Arizonans living with Huntington’s. About 30,000 Americans are symptomatic and more than 200,000 nationwide are at risk of inheriting the disease, the HDSA says.
The disease typically manifests between the ages of 30 and 50 with a diverse range of symptoms, which can include personality changes, mood swings, depression, forgetfulness, impaired judgment, unsteady gait, involuntary movements, slurred speech, difficulty swallowing and weight loss. Eventually patients become severely mentally and physically impaired.
Jasmine was diagnosed with the aggressive juvenile onset form following a seizure. At age 20, she can no longer walk or talk and is unable to eat on her own.
Chris, 18, is still able to crawl and has difficulty eating and speaking but is very “strong-willed like his father,” said Garcia, whose entire family is engaged in raising funds to support education, advocacy and research for Huntington’s.
“I come from a large Mexican family that is super supportive and gets involved in everything, so this is not a one-person effort. We are all in it together,” Garcia said. “The key is educating people about research and how far it has come. So far, there are some medications to help with symptoms, but no medication to slow the progression of the disease. We have to find something to slow it down until they can find a cure.”
Promoting awareness can potentially impact quality of life for patients and their families through the Huntington’s Disease Parity Act, which has been languishing in Congress for more than eight years, said Jennifer Simpson, senior manager of advocacy and youth programs for HDSA.
Simpson said the goal of the bill is to waive the two-year waiting period for Huntington’s patients to receive Medicare benefits after their Social Security Disability has been approved. The waiting period has been waived for patients with ALS. The HDSA is lobbying for the same consideration for Huntington’s patients.
“These are similar disease groups with similar courses. (Huntington’s) impacts not just the body, but the mind as well. Folks can’t wait two years for Medicare benefits. Lots of adverse things can happen during two years that puts folks into medical debt,” Simpson said.
She emphasized that many Huntington’s patients lose their employee-sponsored insurance after becoming unable to work, and purchasing other insurance is often cost-prohibitive.
“When folks get to the point where they can’t work anymore, right now that is the only stage of the disease where we can manage symptoms with pharmaceutical intervention and continuous medical care,” Simpson said. “If they don’t have insurance, many go without consistent care or struggle to pay for it when they will need their finances later on. As we know, once they get to the end stage of the disease, most folks end up in long-term care and those costs really deplete families’ finances.”
Simpson said the HDSA is working hard to raise awareness about the realities that Huntington’s patients and their families face in order to push House Resolution 2770 and Senate Bill 1476 through Congress this year.