09/29/2026
One of our members received this email from a friend. Since it's an event in Concord NH, I thought I would share the info:
Dearest Friends, Families and Colleagues,
I’m reaching out to invite you to join my family in supporting an upcoming fundraising event for Chronic Recurrent Multifocal Osteomyelitis (CRMO) research—the annual Kaila’s Komfort 5K/Walk-a-Thon. Kaila’s Komfort is a non-profit that raises money for CRMO research at Seattle Children’s Hospital year round, more information about this charity can be found here: About Us. This will be our family’s first year participating, and I hope many of you will consider donating and/or walking or running with us, either in person or remotely.
As some of you know, our daughter Evelyn was diagnosed with CRMO in 2024 after several months of confusing, alarming, and extremely painful symptoms. CRMO is a very rare autoinflammatory bone disease that causes the body to break down its own bones, creating painful lesions and triggering secondary symptoms such as fatigue, headaches, dizziness, arthritis, fevers, and more. CRMO affects 1 in 1 million people, and because it is so rare and is diagnosed largely by ruling out other conditions, many children endure long, difficult diagnostic journeys and delays in receiving appropriate treatment.
Even after diagnosis, treatment can be complex and challenging. There are currently no FDA-approved medications specifically indicated for CRMO, so every treatment is considered experimental for this use. Some children respond to standard anti-inflammatory medications, while others—like Evelyn—are treatment-resistant and require multiple daily medications, regular infusions, extensive imaging, and ongoing care from a team of specialists. Navigating these treatments and securing insurance approvals is often an intense and time-consuming process for families.
On the outside, Evelyn is a funny, active, and creative kid who loves drawing, swimming, and riding her bike. On the inside, she is managing chronic pain, fatigue, and an immune system that views her bones as the enemy. I share our experience to spread awareness for how difficult it can be to live with and manage a rare “invisible” disease—and how critical it is to invest in research that can improve diagnosis, expand treatment options, and increase access to care for all families facing CRMO.
That is why this event is so important. The Kaila’s Komfort 5K/Walk-a-Thon raises funds specifically for CRMO research, with the goal of advancing our understanding of the disease and improving future treatment protocols and outcomes.
This year, VHB has generously agreed to match every dollar donated through Team Evelyn, doubling the impact of your support.
You can participate in the following ways:
Donate to Team Evelyn
Contributions of any amount are greatly appreciated and will be matched by VHB when made through the Team Evelyn option.
Funds raised support CRMO research efforts coordinated by Kaila’s Komfort.
Walk or Run—Anywhere, Anytime During the Event Window
You can complete your walk or run between October 10 and October 18, at any location that works for you.
This is a flexible, community-focused 5K/Walk-a-Thon, not a formal race.
Join Us In Person (Optional)
We will be gathering at the track at Memorial Field in Concord, NH from 1:00–3:00 p.m. on Sunday, October 18.
If you are interested in joining us in person, please let me know so I can share logistics and help coordinate.
To ensure your donation or ticket fee is matched by VHB, please use this sign up link: https://givebutter.com/2026-crmo-awareness-virtual-5k-walk-a-thon/team-evelyn-4/melidube or go directly to the event donation page and select “Team Evelyn” from the drop-down menu. If you have any questions, please feel free to reach out!
Thank you for considering this opportunity to support CRMO research, help families like ours, and make a meaningful difference for children living with rare diseases.
Best wishes!
