Building Community
in Vermont and Beyond
to Travel the Road of
Rare Disease Together
Who we are
WE ARE rare disease patients, mothers, fathers, siblings, caregivers, advocates and activists.
WE ARE an organization that cares deeply about creating a community for those living with and affected by rare disease in Vermont and beyond.
WE ARE a group that aims to provide support and resources for this community, as well as break down some of the barriers for people living with rare disease.
WE ARE going to make rare disease not so “rare” by raising awareness, having conversations and providing educational opportunities.
Our Mission
Vermont Rare is dedicated to raising funds and awareness in support of patients and families who live with rare disease.
Where We’re Headed
Our goal is to become more involved in helping families, situations in need, and causes where we can impact folks in a positive way. We see ourselves branching out to more education platforms with information and possibly councelling people in real life situations.
“Jack! We got your check and are beyond grateful. We headed to Boston yesterday, and honestly were super nervous about paying for gas. Things have been tight. We appreciate it more than you know, and hope to return the favor someday in some way. We are beyond grateful for your kindness.”
Shop Ungrounded Coffee Roasters and help support Vermont Rare.
Use coupon code RASRIDE for an extra 10% off at checkout.
“While we try to teach our children all about life, our children teach us what life is all about.”
-Angela Schwindt
Our Inspiration
Our son Shane who is now 14 years old was born in 2010 at Dartmouth Hitchcock Medical Center in Hanover, NH. Probably a good thing too as it wasn’t long before Shane found himself with a team of fine doctors.
Several months after arriving home, things just weren’t right. Shane was starting to have trouble nursing, sleeping, reflux, and his movements were slow. He wasn’t exactly developing like your typical 6-9 month old—the term “Failure to Thrive” was thrown around a lot. But really, what is “typical” or “normal”?
We continued on the current course with doctor follow-ups, more referrals, tests, examinations, long nights searching the internet, operations and many overnights at DHMC and Boston Children’s. To make a long decade story short, in the late spring of 2014 Shane was diagnosed with a rare genetic disorder, Cardio-Facio-Cutaneous Syndrome, or CFC, a RASopathy, or developmental syndrome that lies along the RAS pathway.
At fourteen, Shane is who Shane is and we wouldn’t change a thing. Currently a eighth grader, loving what he is able to do in the classroom and throughout his school day as he navigates neurodiversity on a daily basis. We, his family and folks around him continue to learn from his smile, stamina, excitement, determination and vigor.
-Jack and Marybeth Bailey
How Can I Help Support Vermont Rare?
Donate
Donate to Vermont Rare and help provide support and resources for the rare disease community.
Register for the Ride
Join us in this epic Vermont gravel adventure! Support an important cause while doing what you love.
Volunteer for the Ride
Hosting a gravel event is a big job, and we could use your help! Show your support and make a gravel rider smile!
Partner With Us
Partnering with Vermont Rare means supporting an important cause. Let’s talk about ways we can work together.
Donate
Donate to Vermont Rare and help provide support and resources for the rare disease community.
Register for the Ride
Join us in this epic Vermont gravel adventure! Support an important cause while doing what you love.
Volunteer for the Ride
Hosting a gravel event is a big job, and we could use your help! Show your support and make a gravel rider smile!
Partner With Us
Partnering with Vermont Rare means supporting an important cause. Let’s talk about ways we can work together.