Progress in GSD1b doesn’t happen by accident. It takes families willing to share their stories, a strong patient organization coordinating research and support, and a wider community ready to show up. This ride brings all of that together.
This August, two friends are taking on a 1,000 km bikepacking journey across the Alps in 10 days, from the Mediterranean Sea to Lake Geneva, along the France–Italy border. Every day of the ride is dedicated to a different person living with Glycogen Storage Disease type 1b (GSD1b), a rare metabolic liver disease that affects how the body stores and releases glucose and how it fights infections. The goal is to raise awareness, raise funds, and ride every kilometer in honor of the GSD1b community. All donations support Sophie’s Hope Foundation/cureGSD1b and help drive research, support families, move us closer to better treatments, and ultimately, a cure.
GSD1b disrupts both glucose metabolism and neutrophil function. For patients, that means strict cornstarch regimens and an extremely limited diet, ‘round the clock feeds to keep blood sugar stable, frequent and severe infections, inflammatory bowel disease, and countless hospital visits. It means minimal sleep, chronic fatigue, and a constant mental load, knowing that life threatening hypoglycemia can occur at any time. “Normal life” often looks like alarms going off throughout the night, weighing cornstarch doses, troubleshooting feeding pumps, tracking labs, and trying to keep patients out of the hospital while still letting them live as fully as possible.
Phil and his family know this reality well. They’ve lived with GSD1b since 2014 and have refused to let the disease fully dictate their lives.
Phil and his friend Toby will face roughly 1,000 km of climbing, remote sections, and plenty of unknowns over 10 days. They’ll be working to a tight schedule, managing food, water, and sleep carefully, and relying on the right gear to stay safe. It’s a physical challenge, but it’s also a stand-in for what GSD1b families face every day: constant vigilance, careful planning, and pushing forward anyway. Each day on the trail is dedicated to a different person in the global GSD1b community pushing for better treatments and a safer future.
But you don’t have to be on a bike in the Alps to be part of this challenge. Phil will share updates from the road, photos, short videos, and reflections when time allows, on his Instagram:
https://www.instagram.com/fillip.matthew/
The foundation will post highlights on the cureGSD1b Instagram and Facebook pages:
Instagram: https://www.instagram.com/cure_gsd1b/
Facebook: https://www.facebook.com/profile.php?id=61552576262064
This is where your donation comes in. Every euro or dollar goes directly to Sophie’s Hope Foundation/cureGSD1b: funding research, supporting patient-driven data collection, and helping families who are managing this disease around the clock. There’s no minimum that’s too small. If you can give, do it now, before the ride starts, so Phil and Toby can see the support behind them as they roll out:
👉 Donate here: https://ridegsd1b.funraise.org/
Checking in, sharing posts, and offering encouragement all help keep morale high when the climbs get steep and the days get long. For Phil, Toby, and the GSD1b community, this ride is a way of saying: we are not waiting passively for solutions. We’re out there, pushing forward, on the trail and in everyday life. Don’t just follow the ride. Fund it. Visit https://ridegsd1b.funraise.org/ and give what you can. Every contribution, big or small, brings the GSD1b community one step closer to better treatments, and one day, a cure.