Welcome to Amy Gietzen's Stepping Out to Cure Scleroderma Page!

The Count down begins

There’s something powerful about a countdown.
The anticipation. The preparation. The excitement building day by day.

And for me, the countdown to the Rochester Scleroderma Walk on July 11 means so much more than putting on sneakers and showing up at the starting line. It means hope. It means community. It means fighting for a future where nobody hears the words “there is no cure” ever again.

Every dollar raised through this walk helps support critical scleroderma research — research that can improve treatments, advance earlier diagnosis, and one day lead us to a cure. For those of us living with scleroderma, this isn’t just a cause. It’s personal.

As someone living with scleroderma, pulmonary hypertension, and ILD, I know firsthand how unpredictable this disease can be. Some days my body feels like it’s running on expired coupons and sheer stubbornness. Other days, getting out the door feels like an Olympic event. But events like this remind me that we are never walking alone.

The Rochester walk is filled with patients, caregivers, families, physicians, advocates, and friends who all show up for one reason: to make a difference. And honestly? There is nothing more inspiring than seeing a sea of people united by compassion and determination.

This walk is also about awareness. Scleroderma is often misunderstood and underrecognized, despite how devastating it can be. Every conversation, every donation, every shared post helps shine a light on a disease that deserves far more attention and research funding.

So here we are — counting down the days.

Counting down to hugs with friends who just get it.
Counting down to laughter, support, and maybe a few matching team shirts that seemed like a good idea at 2 a.m.
Counting down to honoring the warriors we’ve lost and celebrating the strength of those still fighting.

Most importantly, we’re counting down to impact.

If you’ve donated, shared a fundraiser, joined a team, or simply encouraged someone living with scleroderma — thank you. You are part of this movement.

And if you’re wondering whether one person can really make a difference, the answer is yes. Research breakthroughs begin because people cared enough to act.

So on July 11, we walk for answers.
We walk for awareness.
We walk for hope.
And we keep moving forward — one step at a time.

Walking for Scleroderma

Alright friends… it’s that time of year again where I voluntarily sign up to walk a suspiciously long distance 😄

I’m walking in the Rochester Scleroderma Walk, and this one is personal. Scleroderma isn’t just a big, hard-to-pronounce word—it’s a daily reality for me and so many others. It’s tough, unpredictable, and definitely did not RSVP before showing up in my life.

But here’s the good part: we get to do something about it.

Every step we take and every dollar raised helps fund research, support patients, and move us closer to better treatments (and someday, a cure—because we like to aim high around here).

So if you’ve ever laughed with me, cheered me on, or even just thought, “Wow, she’s really out here doing the most,” this is your moment to join in.

👉 Donate if you can
👉 Share if you’re feeling generous
👉 Cheer loudly—it counts, I promise

Let’s turn this walk into something powerful. Bonus: you’ll be supporting a great cause and helping me justify all these steps. Win-win.

Thank you for being part of my team 💙