By Nicholas Vercilla
In 1992, the annual Huntington’s Disease Society of America convention was coming to Pittsburgh.
Alexander Andres decided to raise awareness for both the disease and the convention by running 230 miles from Pittsburgh to the U.S. Capitol Building in Washington, D.C.
Andres, who is the Beaver Council president, said it took him nine days, starting at Point State Park, to travel to D.C.
His mother, Charlotte Andres, had Huntington’s disease.
Andres has also been raising funding and awareness for the disease through the annual Charlotte’s Run 5K and Fun Walk.
After a two-year hiatus due to the COVID-19 pandemic, Charlotte’s Run is set to return at 9 a.m. May 21 at the Community College of Beaver County.
What is Huntington’s disease?
Andres said Huntington’s disease is a genetic neurological disorder that affects both a person’s motor functions, making them have “jerky” movements, as well as their cognitive reasoning, which affects a person’s communication skills.
He said the disease is dominant-progressive.
“If a parent has Huntington’s disease, then the children have a 50% chance of having that disease,” Andres said. “But, if the parent is clear, the disease stops there, too. It doesn’t skip generations.”
Andres said his family noticed his mother having symptoms when he was a teenager, but it wasn’t until 1990 that she had to be placed in a nursing home.
That was the catalyst, Andres said, for starting the race.
“We wanted to see if there was more that we can do and help out with Huntington’s disease,” Andres said. “At the time, I was an avid runner. I decided that we can do a race for Huntington’s disease, and we called it Charlotte’s Run after my mom.”
Race details and history
Both the 5K race and the Fun Walk will take place at 9 a.m.
The cost is $20 per participant, per race up through May 20, and $25 per participant on race day.
There will be awards for the first, second and third overall for male and female, plus for each age division, male and female.
All proceeds from the event benefit The Huntington’s Disease Society of America, Western PA Chapter.
Andres said for the first couple of years, the event was held at his alma mater, the former Center High School.
Then, for over 20 years, the event was held in the parking lot of the Beaver Valley Mall, before moving a few years ago to CCBC.
“It’s been a good partnership so far, a nice course through the campus. It makes for a good day,” Andres said.
So far, the event has raised around $150,000 for Huntington’s disease research and treatment.
Andres said the community support has been great over the years from different groups and organizations, such as CCBC, Ryno Production Inc. in Aliquippa, and Boy Scouts of America Troop No. 423 in Center Township, as well as different dedicated runners in the area.
He said the South Side School Area School District alone is bringing around 50 students to run in the event.
A tribute to Tim "Big Dog" Rakovan II
Andres said this year's race will be held in tribute to Tim "Big Dog" Rakovan II, 28, who passed away from Huntington's Disease on Nov. 3, 2021.
"We lost him way too soon. Big Dog had a big heart and great smile," Andres said. "His short life was filled with love, hope and happiness which is all we can ensure for all people with HD."
He said a few years ago, Tim's mother, Elaine Rakovan reached out to him asking for advice about running a Huntington's Disease 5K, as Tim's father, Tim Rakovan Sr., had passed from Huntington's Disease.
As it turns out, it was a small world, as Andres and the elder Rakovan went to college and played band together.
"Tim and I never discussed it during college, and we never knew we link by this rare disease," Andres said.
A day of escape
Andres said there are often people who have Huntington’s disease who come, either to participate in the event or to simply hang out, as it acts as an escape from some of the stress they face with the disease.
“They come to the race and spend time away from some of the daily struggles Huntington’s disease causes,” Andres said.
Andres said he remembers his experience during his 230-mile run well, as he remembers some of his friends following him by car to make sure he was doing well during his running.
He said he remembers The Times covering his journey in detail, as well as speaking to Pittsburgh journalist Larry Richert every day at his former radio show, “Wake Up with Larry Richert.”
Andres said when he arrived at the Capitol Building, he was supposed to meet his friends at the top of the steps.
It turned out, Andres went up the wrong flight of steps and missed his friends greeting him at the finish line.
On the way back, Andres would note to his friends the cities and places he had spent the night during his long journey.