Published on August 10, 2021 | For over 20 years, the Walk for PKD has united families, friends, and PKD supporters to raise vital dollars for PKD research. Last year, the Walk for PKD had a major change. It went virtual. While the PKD community couldn’t walk together in person, that didn’t stop teams like Grant’s Troops from raising awareness across the country. Led by Team Captain Kristin Caputo, 135 friends and family from multiple cities joined Grant’s Troops to spread PKD awareness. Today, Kristin tells us about her 2020 Walk for PKD experience and why she walks.
How did get you involved with the PKD Foundation?
Kristin: Due to COVID-19, I didn’t have many in-person visits to the OBGYN during the third trimester. Our doctor was very conservative and wanted to do a late-term ultrasound (at 37-weeks pregnant) to see how everything was going. The ultrasound showed “bright spots” on our baby’s kidneys. But because they saw normal organ function, we were told it was probably nothing. The recommendation was to ask for an ultrasound on the baby’s kidneys once he was born just to be sure. In the two days following baby Grant’s birth, we met with a team of doctors from Levine Children’s Hospital in Charlotte that consisted of a nephrologist, pediatricians, and genetic specialists. They did an ultrasound and found small cysts in both kidneys.
A blood draw and genetic testing determined that Grant was born with a mutated PKD1 gene. We wouldn’t have known for years our son had PKD if it weren’t for that late-term ultrasound. This was the first we had heard of PKD. After a lot of research, we found the PKD Foundation, joined the Charlotte Chapter, and signed up for the Walk to raise funds and awareness for our son and others with PKD.
Was last year your first Walk for PKD event?
Kristin: This was our first Walk—we hadn’t even heard of PKD until Grant’s diagnosis in early June of 2020!
How did the Grant’s Troops team start?
Kristin: We learned about the Walk through the PKD Foundation and decided to create a team to raise funds and awareness. Grant is our son’s name so we named the team after him. We first made a post to social media on PKD Awareness Day in September to let our friends and family know about Grant’s diagnosis and announced our team.
For the Walk, what was it like having 135 family members and friends participate around the country?
Kristin: It was very humbling to have so many people participate—some donated, some walked, many did both. We heard from people we hadn’t heard from in years. We had 135 of our family and friends across Charlotte, Bluffton (Hilton Head), Cleveland, Baltimore, and Atlanta walk virtually “together” one morning during the virtual walk. Everyone sent us pictures of their teal shirts, bows, bracelets, balloons, signs, and even a decorated golf cart.
What were your favorite Walk team moments from the 10 Days. One Goal Walk event?
Kristin: As a team, we chose to walk at 10 a.m. on October 10, and everyone across the country walked at the same time–rain or shine! My favorite part was knowing everyone was walking together for baby Grant in hopes of a cure in the future.
What do you and the Grant’s Troops team hope to see during this year’s virtual Walk?
Kristin: I would have loved an in-person event to meet others in Charlotte, but I look forward to being a part of this Chapter for a long time to support my son. For the virtual event this year, I look forward to seeing people come together across the country for a common goal and the outpour of support and love we felt during that time.
Any anything else you’d like to share?
Kristin: Since Grant’s initial diagnosis, my husband, other son, and myself have all been tested and none of us have the PKD gene. Grant is one of the rare 10% with spontaneous mutation. The doctors we’ve met have very few known cases of babies with PKD, as many don’t find out until they present symptoms later in life. While we know Grant has cysts, and the second ultrasound (done at six months old) showed growth in the existing cysts and formation of new ones, he leads a totally normal childhood.
Through the Walk and being a part of the Foundation, we hope to find others to connect with and continue learning about PKD, treatments once he does present symptoms, and all work together towards a cure!
Why do you walk for PKD? Download our template and share your story.
Another form of PKD, found specifically in children, is ARPKD. New this year is the ARPKD Research Fund. The ARPKD Research Fund allows Walkers to direct their fundraising specifically to autosomal recessive polycystic disease (ARPKD) research. 100% of each donation to this event will fund life-saving, ARPKD research.
To find a virtual Walk for PKD event near you, visit walkforpkd.org and register today.