By K.D. Norris
When it comes to Huntington’s disease, a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain, some people simply do not want to know if they have the defective gene.
According to the Huntington’s Disease Society of America (HDSA), there are currently approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are sometimes described as having ALS, Parkinson’s and Alzheimer’s — simultaneously. And it has no cure.
For Ashley Greenway, a wife and mother from Holland, Mich., who has tested positive for Huntington’s disease (HD) — leading to the knowledge that it may well impact her physical and mental abilities during her prime years and that her two children are at risk — testing was the right thing to do.
In her case, knowledge was and is power: the power to speak out; the power to advocate; the power to help others now and — maybe — her children in the future.
“Someday, my kids may need to take advantage of the resources HDSA has to offer and I wanted to make sure that I did my part,” Greenway said recently to WKTV. “It’s the same feeling when I participate in medical studies for HDSA. Last week I was in Wisconsin and had a lumbar puncture done so HDSA could have spinal fluid to assist in their efforts to better understand the disease and find a cure.
“A cure may not be available in my lifetime, but perhaps my kids could receive it. It’s very rewarding just thinking that I play a small part in helping understand and cure this disease.”
Finding out, finding ways to help
After first finding out she was at risk in 2006, then researching and agreeing to be tested, she tested positive in 2012. She then also faced inward soul-searching and outward reflection of her own family.
“At the time of diagnosis I was working outside the home and a mother already,” Greenway said. “I do believe that if I had known my prognosis prior to having kids, it would have impacted my decision on starting a family. The first thing my parent with HD said to me when I told them I was positive was ‘I’m sorry’. … I can’t imagine the guilt I’ll feel if I find out I passed this on to my kids.”
But, she points out, now there are methods available for couples at risk of HD to have kids with no HD risk.
While she declined to talk much about her HD-positive parent — who is nearing 60 year old but with no symptoms — Greenway did say was the only one in her family, out of 20 at risk members (first cousins, their children, siblings, and nephews), that has been tested voluntarily.
“No one else is open about it or wants to know,” she said.
“I used to think of that day (when she learned the test results) as the day I was given my expiration date, but now I see it as the day I became a better person,” Greenway said in supplied material. “Surprisingly, I didn’t cry. I was too in shock to process. I was trying to figure out what this meant and how I felt. I have three siblings, two nephews, and my own two children that are at risk of inheriting this horrific disease and I’m the only one who’s been tested.”
And how did she respond to knowing?
In 2013, Greenway started to get more involved in the HD community, including involvement with the Predict HD medical study out of Rochester, New York. In 2014, Ashley was involved with the documentary film Alive and Well, the film follows seven people coming to terms with the reality of living with HD.
She went back to school, graduating in 2015 from Baker College of Muskegon with an associates degree in business. In 2019, she trained for the Chicago Marathon with Team Run for HD, but it was cancelled due to the pandemic. Recently she took part in the Huntington’s Disease Society of America (HDSA) #LetsTalkAboutHD Stories.
She has also have become heavily involved with the annual HDSA’s West Michigan Team Hope Walk/5K Run — the West Michigan portion of HDSA’s largest national grassroots fundraising event, which takes place in over 100 cities across the U.S. and has raised more than $20 million for Huntington’s disease since its inception in 2007.
She has gained support from her family in her work as well — husband Kyle, daughter Bailey and son Brody — both with her fundraising and with her advocacy for the cause. To honor all that support, she even has made a quilt out of all her family’s and friend’s Team Hope shirts from previous years and donated it to HDSA as a silent auction raffle item.
She is now lead coordinator for the local event, and has seen the event though a rough time in this time of COVID.
“During 2020, HDSA had to cancel all of their in-person events,” Greenway said. “These events generate a lot of funds for social worker’s salaries, grants to scientists for trials, or money to families affected by HD for medical bills. Whatever the use of the funds, they were understandably lacking during the pandemic. … It was important to me that our group still meet our fundraising goal for the year.”
And, Greenway says, she leans on her HD-positive parent as she moves into the future.
“My HD positive parent is still here inspiring me to stay strong and encouraging me to get more involved in HDSA, without symptoms,” she said in supplied material. “My involvement in HDSA provides me with a sense of purpose I’ve never felt before. When HD takes me out of this world, I’ll be leaving it a better place because of how I’ve helped this HD Community.”
Huntington’s Disease Society of America
HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA.
The DNA error that causes HD is found in a gene called “huntingtin”. This gene was discovered in 1993. Everyone has the “huntingtin” gene, but only those that inherit the mistake, known as the HD mutation, will develop HD and risk passing it on to their children.
HDSA, according to supplied material, is the “premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.”
One of its current efforts involved changes to federal rules which it comes to Medicare policy through advocacy for the HD Parity Act (HR 2050/S 868) in 2021.
“Without passage of the HD Parity Act, patients with Huntington’s disease will continue to suffer the mandated 2-year waiting period for Medicare benefits after qualifying for Social Security Disability Insurance,” according to an HDSA statement. “Individuals with HD have a progressive, fatal neurodegenerative disorder. During those two years, patients continue to decline, and are falling through our social safety net by being denied access to Medicare when they need it most.”
For more information on the HD Parity Act, visit HDSA.org/takeaction.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit HDSA.org or call 800-345-HDSA.
