Connect with our local chapter:

By Jackson Wang

Sitting at her dining room table and looking at pictures of her mother brings back a lot of fond memories for Jessie Barr. The photos are a reminder of her mom’s caring and compassionate nature.

“My mom was a very chipper person who loved to be around everybody," Barr said.

She was someone who Barr says always looked after Barr, her sisters, and her father. But recently, it’s been tough for Jessie to witness who her mother has become. Mentally, physically, and emotionally, she is not the same woman she once was.

"My kids not having that grandmother influence in their lives has been very difficult," Barr said.

In 2006, her mother was diagnosed with Huntington’s disease. It’s a fatal genetic disorder, which causes the progressive breakdown of nerve cells in the brain. Barr’s grandfather had it as well and passed away about a decade before her mother’s diagnosis.

"It can be passed from parent to children, regardless of age, regardless of sex, regardless of race," Barr said.

Currently, there’s no cure for it. Because of that and the impact Huntington’s has had on her family, Barr decided to take action. Working with others in the region affected by this disease, in 2011, she started a local affiliate of Huntington’s Disease Society of America.

"We started off with our first event and raised $16,000, and over the years, we have steadily increased that to now…we make around $100,000 each year," said Barr, a board member of the Albany chapter, which was officially established in 2016.

This is an important month for them, because May is Huntington’s Disease Awareness Month. It’s an opportunity to bring more attention to a disease that currently affects more than 19,000 New Yorkers.

"With those funds and all the research that is going on, someday, hopefully, families won’t go through what my family has gone through, and multiple other families in this region have gone through," Barr said.

Today, her mother is living at a facility in Utica that specializes in Huntington’s. Barr visits whenever the facility allows her to.

Barr says she has been tested for the disease and the results came back negative, which is a relief for her. But she knows many others who didn’t have that same outcome, which is why she continues her advocacy.

If you would like to learn more about the disease, visit HDSA.org