FAIRMONT, W.Va. – More than 100 participants took part in the 8th annual Aidan’s Ride West Virginia.
The event, which includes a motorcycle ride through the region, is a fundraiser for the ALD Alliance, a nonprofit that focuses on adrenoleukodystrophy (ALD). The disease mostly affects boys and men, according to the founder of ALD Alliance, Elisa Seeger. Seeger’s son Aidan, who the ride is named after, died from ALD in 2012 and she said after that she started the foundation to fight for screening for the disease in newborns, something that did not happen with her son.
“If we had this in 2004 when my son was born, he would be alive right now because we would be able to monitor and treat before the onset of symptoms,” Seeger said.
Now she said she is trying to make sure that every baby born in the U.S. is screened so that they too are not lost because of ALD.
Seeger said the federal government recommends screening for the disease, but most states don’t do so. In fact, she said, when Aidan was born there were no states screening for ALD. However, since his death things have changed, largely, due to the efforts of her organization.
“In New York, we have Aidan’s Law that was signed in 2013, we became the first state to start testing for ALD,” Seeger said. “And I spend a lot of time going throughout the country to have other states come on board and currently we are at 20 states that are screening. West Virginia is not one of them and we’re here today to raise money to continue our efforts. Not only for ALD, but to help the families that are affected with the disease and to hopefully try to make it uniform nationwide. Imagine knowing if you had a child tomorrow in West Virginia that they could die, but if you had your child in one of the 20 other states they would live. That’s what we’re fighting for, to make it uniform throughout the country.”
That fight, Seeger said, has not been easy. Prior to the pandemic, she spent a lot of time in Washington, D.C. trying to lobby lawmakers to rally around her cause. She said ALD Alliance even has an online petition, which has around 250,00 signatures.
All of this support is key to making a change for the better nationwide, Seeger said. She added that she is happy to know that so many people care and so many were willing to show up for this year’s event.
“It’s amazing, it’s of course really emotional for me to see the turnout,” Seeger said. “Again, as you mentioned with COVID, we never know what to expect, if people will come out. But it’s a great turnout and despite what’s going on in the country today and a little bit of the cold weather — to have this many people is really amazing.”