Lydia Sand is a full-time young professional, an organizer and an advocate, a traveler, a runner, and a threat on the sand volleyball court.
“I don’t want to just sit and squander opportunities,” she says. “I have a daily reminder that life is short – and life can change.”
Overachiever and overcomer, 28-year-old Lydia was diagnosed with cystic fibrosis (CF) in January 2001, after years of being misdiagnosed with allergies.
According to Cystic Fibrosis Research, Inc., “Cystic fibrosis (CF) is a progressive and rare genetic disease,” and it wreaks havoc on the lungs and digestive system. About 1,000 individuals are diagnosed with CF annually, and more than 30,000 people in the U.S. live with CF, the Cystic Fibrosis Foundation reports.
Currently, cystic fibrosis has no cure. Lydia is fighting to change that.
“My parents and I came up a motto: ‘Get smart and stay positive.’ We actually put it on our fridge,” Lydia says. “It just became part of our new normal” – a new normal that quickly expanded to include all-in family involvement with the Cystic Fibrosis Foundation.
Living in Sioux Falls, SD, at the time, the Sands rallied a team – Team Lydia – for Great Strides, the Foundation’s signature walk and largest national fundraiser. More than 200 people joined Team Lydia for the 2001 event, including Lydia’s third-grade class.
“We raised $10,000 and actually doubled the size of the walk that year in Sioux Falls,” Lydia says. “We just dove into that, and I feel like it gave me and my parents an outlet. … Raising money and sharing our story was one way to make a difference.”
From ages 9-to-19, Lydia participated in the Sioux Falls Great Strides. “It became second nature to me. I did my CF care routine, and I did Team Lydia and fundraising.”
Already equipped with a dive-into-it-and-make-a-difference “We Don’t Coast”-mindset, Lydia moved to Omaha in August of 2013 to attend grad school at University of Nebraska-Omaha, where she earned her master’s degree in public administration. She works at UNMC as program coordinator for the Nebraska Area Health Education Center (AHEC), a program that helps to meet the state’s healthcare workforce needs.
“When I moved here, I didn’t know anyone. It was actually a pretty scary life choice for me,” Lydia says. “I feel like I’ve worked really hard to develop a community.”
This coming Great Strides (Saturday, May 18 at Stinson Park in Aksarben Village) will be Lydia’s third in Omaha. Her goal is to raise $30,000 – what would be an $8,000 increase over the current team record.
All told, Lydia says Team Lydia has generated well over $100,000 in donations. She is seeing the strides those dollars are making – new medications are being developed and life expectancies are increasing.
“When I was diagnosed, [life expectancy] was 32 [years]. Now, it’s around 40,” she says. “Knowing that dollars I’ve raised have helped contribute to all of that has been really uplifting.”
In the interest of doing and raising even more, Lydia is hosting her first-ever Team Lydia Sand-Volleyball Tournament in August to benefit the CF Foundation. She also shares her story on Facebook and Instagram (@Inspireinthesandbox). “It’s really been a growing experience for me, putting myself out there that way,” she says.
“I’m just trying to convey CF reality.”
Lydia’s reality is a regular course of medication (almost 30 pills throughout the day) and twice-daily respiratory treatments – 30-minutes each. She has to carefully plan her eating, is much more susceptible to illness and slower to recover.
“It’s a constant mental battle,” she says. “At the same time – and it’s taken me a long time to admit this – I’m also grateful that I have CF in the sense that it’s made me who I am, allowed me to have the perspective that I have.”
WE ARE O.NE.
Let’s make this a place where I get to be me and you get to be you.