Lifting for Tegan: Why Every Rep Matters

When Tegan was born, we knew something was different. His diagnosis of Albinism felt overwhelming—his legal blindness and lack of pigment raised a wave of questions. Would he be able to ride a bike? Play at the beach? Live fully with vision impairment?

What we didn’t know then was that Albinism was only part of a much larger and more devastating diagnosis: Hermansky-Pudlak Syndrome (HPS). This rare genetic disorder doesn’t just affect pigmentation and vision—it impacts blood clotting, immune function, and in the most severe forms, leads to pulmonary fibrosis, a fatal scarring of the lungs.

When Tegan was just three, a routine ear tube surgery turned into a medical emergency. He bled from his ears for 24 hours, forming a clot that doctors were afraid to remove. Thankfully, one ENT recognized the signs of HPS and sent us for genetic testing. That’s when we heard the words no parent should ever have to hear: “Your son has Type 1 HPS.”

The moment I got the call, my world stopped. My beautiful, curious three-year-old had a disease that could one day take him from us. That night, through tears, I found the number for the HPS Network. Donna Appell, the founder, answered. She didn’t rush me. She listened while I cried. She gave me hope.

Today, Tegan is almost 12. He’s funny, kind, imaginative, and brave. He climbs rocks, goes canyoneering, and rides his bike with pride (and a helmet!). He lives with courage and joy every day. But life with HPS is hard. It means regular bloodwork, constant monitoring, hospital visits, immune system challenges—and the ever-present shadow of pulmonary fibrosis.

Still, we live with hope. And that hope is made possible by the HPS Network.

This incredible organization fights every single day—for research, for families, for a cure. They’ve helped us access life-saving clinical trials, enroll in NIH research, and find support when we’ve needed it most. They are lifelines in our darkest moments—and beacons of hope for the future.

Now we’re lifting for that hope.

Join us for the HPS Lift-a-Thon. This event is more than a workout. It’s a mission. Every registration funds research, advocacy, and support for families facing HPS. And tomorrow, Friday, June 6, is the last day to sign up and get a t-shirt with your registration!

Help us lift for Tegan. For every child and family affected by this disease. For a world where a diagnosis of HPS doesn’t come with fear—but with a clear path to a cure.

Every rep. Every dollar. Every story. It all matters.

Let’s lift for strength. Let’s lift for hope. Let’s lift for Tegan.