For Joyce Sireno, there’s power in the unknown.
The Mount Pleasant resident chooses not to know if she has Huntington’s disease, a deadly fatal genetic disorder that causes a steady breakdown of nerve cells in the brain.
Sireno’s family has been hit hard by the disease. The 63-year-old has lost her father and sister to Huntington’s, and two other siblings also have it.
There’s a 50/50 chance Sireno does too, but she's decided not to get tested. Instead, she’s dedicated most of her adult life to research and fundraising to find a cure by working with the Huntington’s Disease Society of America.
On Saturday, the group’s South Carolina chapter is hosting the Charleston Hope Walk, a fundraising event that encourages people who have the disease, and their families, to walk as much as far they can.
The state chapter is based in Columbia, but is seizing an opportunity to expand to the Lowcountry.
“I want to find a cure in my lifetime,” said Sireno, a board member with the South Carolina group. “We already have members in Charleston, but this event is huge because it gives us a chance to grow even more.”
Initially, the Hope Walk was going to be held at James Island County Park. But the coronavirus pandemic prompted the organization to hold a virtual event.
Sireno said they’re encouraging people to start in their own driveways and walk as far as they can without overexerting themselves.
“You can walk down the street or you can do a 10K,” she said. “Whatever you’re able to do is fine. We just want people to still feel encouraged and know they are beating the odds.”
The walk is free, but those who participate are still asked to register and set a fundraising goal at southcarolina.hdsa.org/about/2020-charleston-sc-team-hope-walk.
Participants are also encouraged to take a photo and post on social media using #VirtualTeamHopeWalk, and tag the organization @HDSA on Facebook, Twitter and Instagram.
Though COVID-19 forced the Charleston walk to go virtual, Sireno said it's been a blessing in disguise.
Now, people from all over the country can participate.
She hopes that leads to folks coming to the Holy City next year when they’re able to host the event on James Island.
Beyond Saturday’s event, Sireno is encouraging people to join the local support group for Huntington’s disease. She estimates that there are 300 families in the Charleston area impacted by the disorder.
“I want us to find every single family in the Charleston area that needs a group like ours,” she said. “We are making strides in this area and really want to get our voices out there.”
For more information, email Sireno at firstname.lastname@example.org.