Keeping It Personal

Ashley, now 29, was diagnosed with mild hearing loss when she was just two years old. Aside from wearing hearing aids from a young age, Ashley’s life was impacted very little. She excelled at sports, playing volleyball and ice hockey through high school, and was a strong student. It wasn’t until she was in her mid-twenties that she realized there may be something wrong with her vision, too.

“Ashley had always seemed to have a slight imbalance, but we assumed it was because of the hearing loss.” says Judy. When she started tripping over things more often, Ashley paid a visit to a local ophthalmologist and family friend in Sioux Falls, where she still lives.

“I’ll never forget that day,” recalls Judy. “Ashley called me in Arizona and said, ‘Mom, I’m going blind. He thinks I have a disease called retinitis pigmentosa.’” Judy had never heard of retinitis pigmentosa, or RP, but, through phone calls to their doctor and internet searches, she learned it’s an incurable retinal disease that causes progressive vision loss and, sometimes, blindness. Ashley’s final diagnosis was Usher syndrome, which is when RP is compounded by hearing loss. Usher syndrome is an inherited disease, but, because Ashley is adopted, no one else in their family, including Ashley’s younger sisters, Lindsay and Alli, has ever been affected.

Team Ashley
Team Ashley t-shirts created a sea of red at the Phoenix VisionWalk

Through her internet searches, Judy found the Foundation Fighting Blindness’ website and information about VisionWalk, the Foundation’s 5K walk-a-thon to raise money for retinal disease research —research that could lead to a cure for Usher syndrome. There was a walk coming up in Phoenix, about 20 miles from Pebble Creek, so Judy signed up, and Team Ashley was born.

“As a parent, you want to fix things for your kids, and Usher syndrome was something I couldn’t fix,” says Judy. “VisionWalk is a way for me to do my part and raise money for research. I thought, if I could just get 20 to 30 people to join the team and donate, that would be great. We had more than 100 people join us that first year!”

That was back in 2010. In their second year, Team Ashley nearly doubled in size — to 200 members. And just this past March, at the 2012 Phoenix walk, Team Ashley broke the national VisionWalk record for most walkers, with a team of over 260 people.

For anyone who wants to grow their VisionWalk team, Judy has one piece of advice: Keep it personal.

And that’s where Pebble Creek came in. Judy recognized that she lived in a community with people who genuinely care and are willing to help. She just had to ask. Six months before the Phoenix VisionWalk, Judy sent out a “save the date” postcard to get the event on people’s calendars. Then, when she was ready to being fundraising, she sent letters to every person she and Craig knew, including many of the residents of Pebble Creek. The letter told their friends a little about Ashley and her struggle with Usher syndrome, and encouraged them to join Team Ashley and help raise money for research that could, one day, cure her. Craig, whose company sponsors a team in the Pebble Creek softball league, passed out flyers to all the team captains, who then shared the information with their own teams. And to make sure the walk didn’t fall off anyone’s calendar, Judy sent reminder emails and even made phone calls to her contacts.

“The bottom line is: You have to give people a reason to participate and donate,” emphasizes Judy. “It’s all about the personal connection. Every single person on our team knew me. And if they didn’t know me, they knew Craig or Ashley.”

This year, in particular, Judy was nervous about their ability to grow Team Ashley, because there were a lot of other things going on in and around Pebble Creek the weekend of the walk. Then Judy got an unexpected call from Susan Gloor, the Foundation’s National VisionWalk Director, who issued her a challenge — for Team Ashley to beat the national record.

“When someone offers me a challenge, I'll do what I can to accept that challenge,” says Judy. So she reached out again to her contacts and reissued the same challenge to them. It worked. “It’s the little people who make a difference,” says Judy. “Little things turn into big things. We broke a national record without any corporate support.

Judy’s personal outreach doesn’t end on walk day. She sends a follow-up letter to each member of the team, along with a photo of that person with Ashley, who always flies in for the event, taken at the walk. And, this year, Judy and Craig hosted a luncheon after the walk for her team. “It was our way of thanking them for staying with us over the years, and doing VisionWalk when they could do a million other things.”