Two Names, One Family

Bill and his wife, Toni, know what it feels like to raise a son with a rare disease most people have never heard of. Ian Hatfield was born with Congenital Central Hypoventilation Syndrome, a rare disorder where the body forgets to breathe during sleep. Ian is now 35. He is a CCHS Network board member, our board secretary, and a steady voice for the patient community. Ian also works as a legislative staffer at the Massachusetts State House and volunteers in several local public service opportunities in the town of Topsfield.

"On the trail, I walked for the father I lost. On the water, I paddle for the son I keep." - Bill Hatfield

From Trail to Tide

Thanks to your support over the past several years, we have raised over $17,000.00 from previous fundraising efforts, including a 2,200-mile through hike of the Appalachian Trail, a 560-mile hike of the Colorado Trail, a 530-mile hike of the French Way of the Camino de Santiago in Spain, a 360-mile kayak of the Erie Canal from Buffalo to Albany, and running the San Francisco and Chicago marathons.

Now Bill is back. The trails are behind him. The water is on the horizon.

The Kayak Journey

Route: Old Forge, Adirondacks, New York, to Fort Kent, Maine, along a contiguous water route following the paths of indigenous people and early settlers
Distance: 700 miles, average of 15 to 20 miles per day, and 70 miles of portaging (carrying) the Kayak
Dates: May 17, 2026, to Early July
Goal: 10,000 dollars for CCHS Network
Why this trip: This journey is an opportunity to support children and families living with the daily medical and financial challenges of CCHS, while also experiencing the generosity and kindness of donors and people I will meet along the way; from trail angels who offer a Coca-Cola, a snack, shelter, or simple words of encouragement to the many small acts of generosity, these experiences serve as powerful reminders of the goodness and compassion that exists in people. In a world often bombarded with negative stories from the press, politicians, and social media noise, this experience helps restore my faith in human kindness and community.

Why CCHS Network

CCHS Network is a family-run organization that exists for the children, adults, and parents living with Congenital Central Hypoventilation Syndrome, CCHS. We provide peer support, family education, research advocacy, and the steady community no one finds on diagnosis day. CCHS is an ultra-rare genetic disorder that controls the autonomic nervous system. Children with CCHS have a diminished or absent drive to breathe and require ventilatory support during sleep, and for some, during sleep and while awake. This is a lifelong condition; there is no cure. There are over 4,000 affected families worldwide. They require diligent medical support, lifelong mechanical ventilation, and a host of other interventions for associated medical conditions, including cardiac pacemakers, ophthalmologic conditions, and gastrointestinal complications. Many families are not so fortunate as to have access to financial and medical resources to support their children. Every dollar from this campaign goes directly to programs that will provide education for physicians, nurses, and families, patient family support, and medical research that brings hope to families living with CCHS.

Why This Matters Now

CCHS is an ultra-rare disease. Most pediatricians have never seen a case. Many parents hear the diagnosis in the NICU, while overwhelmed, frightened, and unsure where to turn. The CCHS Network is the place they can turn to for support, guidance, and community. Your gift funds:

Peer support calls between newly diagnosed and seasoned families
Patient registry and research grants
Family conferences and regional meetups
Education for clinicians who treat CCHS patients
Adult transition supports, the area Ian helps lead

A Word from Ian

When my dad first brought up the idea of using one of his “bucket list” adventures as an opportunity to raise awareness and fundraise for the CCHS Network, I was humbled and excited. Together, we organized an email, social media, and text campaign among friends, family, and our professional networks to keep people updated on my dad’s journey through the Appalachian Trail and raise money for the CCHS Network. Upon the celebration of his completion of the Appalachian Trail, he immediately started thinking of what adventures would come next. Since then, over the last 5 years, he’s hiked over 1,500 miles on various “bucket list” endeavors. So far, he’s raised over $17,000 for the CCHS Network and aspires to continue raising more funds for research, family support, and resources for families with children living with CCHS, as well as for adults living with CCHS like myself. Not everyone has the opportunity to make a difference in the lives of others, but we, as a community of people living with CCHS, cherish every chance to make the lives of those who live with CCHS, like me, to live healthy, happy, long lives with every door open to them that they possibly can. CCHS may present more obstacles for us to overcome, but CCHS will never stop us from fulfilling our dreams.

Hatfield Paddle for CCHS

From the Appalachian Trail to open water. Bill paddles for his son and the CCHS community.