Why I Walk: Alex Coglianese

The PKD Foundation has been a landmark in Alex Coglianese’s life for as long as she can remember. Born the same year as the Foundation’s establishment, she recalls her beloved father, Fred, a PKD patient himself, being one of the organization’s very first supporters. From mailings sent to their home, to hearing her father on the phone with other Foundation supporters, to the annual donations her family would make, PKD was quite simply always a part of her vocabulary.

When Alex was in elementary school, her father’s kidneys failed, and “dialysis” was a new word added to her vocabulary. During these years, she watched as her dad had to undergo surgery and had to cut favorite foods like orange juice and bananas from his diet. He dramatically lost weight and developed a gray complexion. The impact was immediate, her family’s daily schedule shifting to revolve around Fred’s care, a new “normal” settling in. In reflecting on that time now, Alex admits, “Before I even hit double digits, I knew more about PKD and dialysis than most adults.”

Later in her elementary school years, Alex’s father received the amazing gift of life: a kidney transplant, thanks to an anonymous donor family in Pennsylvania who lost a loved one in an auto accident. Within hours of the transplant, Alex recalls her father’s complexion restoring to his natural color, and the simple joy of being able to drink orange juice again. Dialysis was a thing of the past, her family forever thankful for the new lease on life Fred had been given.

Periodic rejection episodes, however, would find Fred in and out of the hospital throughout Alex’s adolescence. Her medical vocabulary kept growing as she learned the names of all of the anti-rejection medications her father was taking and started doing her homework on a hospital tray table in Fred’s room. Those bedside lessons made their mark, and Fred got to see Alex graduate from high school.

In 2001, just two days before Alex’s birthday, her father succumbed to a variety of medical complications stemming from his PKD diagnosis. As she sat at her father’s wake on her 19th birthday, the PKD Foundation in its 19th year, as well, Alex decided that she would take a more active role with the organization in honor of him. Having been through the highs of highs and the lows of lows of the PKD journey, Alex knew there were so many families like her own that were in need of the support and education that she could provide.

In September of 2001, Alex joined the New Jersey Chapter of the PKD Foundation and took to participating in the annual Walk for PKD. She helped form Team FerdNinfAnne, in loving memory of her father, and two of his three sisters, Ninfa and Anne. Alex walks in their honor every year.

She eventually stepped up to co-coordinate the event, and fundraises largely through email and text message efforts. She vouches, “Technology is one of my most significant tools in raising awareness and raising funds for the Walk, from email blasts to Twitter and Instagram—these platforms are my greatest fundraising allies.” As such, Alex has also taken quickly to the new fundraising tools on the Walk for PKD web page, which she says are “amazing for creating excitement, enthusiasm and team building for the Walk.”

Alex finds that one of the biggest, most rewarding challenges as a volunteer for the PKD Foundation is being a source of encouragement for others. As a Chapter Coordinator for the New Jersey Chapter, she makes every effort to make connections with her Chapter members, serving as a conduit to network them to one another and sharing in their experiences. In addition, she advises those who are thinking about participating in the Walk to not be afraid to fundraise. “People often find it difficult to ask others for donations,” she says, “but it is amazing to see what a short, heartfelt email or a thoughtful posting on a personal page can generate by way of donations from family, friends and colleagues!”