Microsoftteams image 1kasey

Why I’m Running 40 Road Races for Rare Diseases This Year

Categorized in -

Join Kasey Baker in running a local race or donate to her efforts to raise awareness and celebrate 40 years of NORD, here.

After seeing the daily struggles of friends and colleagues affected by rare diseases, Kasey Baker decided to act. Kasey is running 40 road races across the U.S. throughout the course of 2023 to raise money and awareness in honor of NORD’s 40th Anniversary. “I want people to understand how big our community is, how many people are affected, and why it’s a big issue that we all need to be aware of and tackle collectively,” says Kasey.

Even though she’ll be running hundreds of miles between training and competing, Kasey feels the true challenge ahead of her is raising awareness and shining a spotlight on the number of people affected by rare diseases. She is running because she wants to bring attention to the rare disease community, magnify the struggles and challenges rare patients and families face on a daily basis, and ensure anybody facing a rare disease knows they are not alone in their journey: NORD is waiting for them with open arms to provide support and community throughout the rollercoaster ride that accompanies a rare diagnosis.

“I am certain that every person knows someone who is or was affected by a rare condition or disorder,” says Kasey. “I started working for NORD in 2021 but have seen rare diseases through a variety of different lenses throughout my life. Professionally, this has been through research as a scientist and working in the healthcare industry. Personally, I have seen the effects and heard the stories of the struggles that friends, colleagues, their families, and their children have overcome or still struggle with every day.”

Join Kasey! There are a variety of ways you can support Kasey on her Running for Rare journey.

  1. Donate: Help Kasey reach her $20,000 fundraising goal by the end of 2023! All the money raised will directly support NORD’s mission: to improve the health and well-being of people with rare diseases by driving advances in care, research, and policy.
  2. Follow Kasey on Strava: Users of the fitness tracking app, Strava, can follow Kasey, send messages of support, and help keep her accountable with her strict training schedule. Download Strava from the app store and search “Kasey Baker” or follow this link:
  3. Join Kasey’s Team: Run, walk, or roll with Kasey on race day (or just come say hello!) or join her team satellite-style with an event in your local area. Visit and select “Click here to run” and “Join a team” to see the in-person races you can join, or “Join as an individual” to participate through races in your local area.

Upcoming races:

Rock ‘n’ Roll Washington D.C. Half Marathon (Mar. 18) – Washington D.C.
Bradley Road Race 5K/10K (Mar. 25) – Windsor Locks, CT
Run the Runway 5K (Mar. 26) – Meriden, CT
Mustang Run-Sayles School 5K (Apr. 1) – Baltic, CT
B.A.A. 5K (Apr. 15) – Boston, MA
Brooklyn Half Marathon (Apr. 23) – Brooklyn, NY
Circle of Care 5K (Apr. 30) – Wilton, CT
Vernon Mothers Day Dash 5K (May 14) – Vernon, CT
Natchaug Stop the Stigma 5K (May 20) – Mansfield, CT
Soldier Field 10 Miles (May 27) – Chicago, IL
O’Neills 5K (June 11) – Norwalk, CT
Amber Room Run from the Sun 5K (Aug. 17) – Danbury, CT
Bellingham Bay Half Marathon (Sep. 24) – Bellingham, WA

Completed races:

Kelley’s Pace Frostbite 5 Miler (Jan. 7) – Mystic, CT ✅
Winter Wonderland 5 Miler (Jan. 29) – Milford, CT ✅
Sweetheart Run & Walk 5 Miles (Feb. 11) – Litchfield, CT✅
Make-A-Wish CT 5K (Feb. 18) – Canterbury, CT✅
Rock ‘n’ Roll Las Vegas Half Marathon (Feb. 26) – Las Vegas, NV✅
O’Shenanigan’s 5K (Mar. 11) – Southington, CT✅
Courthouse O’Putnam 5K (Mar. 12) – Putnam, CT✅

If you have any questions about Running for Rare or joining Kasey’s team, reach out to [email protected].

When she is not running or training, Kasey works as NORD’s Associate Director of Technology helping to oversee the IAMRARE natural history studies platform, through which patients or caregivers can safely input their data so researchers better understand how to diagnose and treat rare diseases. With more than 40 studies and 13,600 participants, IAMRARE is yielding important discoveries and helping patients drive research for their conditions.

Over the course of this celebratory year marking the 40th anniversaries of both NORD and the Orphan Drug Act, many people are taking action in support of NORD’s mission to create a better future for people living with rare diseases. Forty years ago, our founders – parents of children living with rare disease – started a grassroots movement and changed the course of history by advocating for legislation that incentivized the development of treatments for conditions affecting small patient populations. Fast-forward to 2023, NORD continues to be a trailblazer by driving advances in care, research, and policy. As we envision the future of rare, we encourage you get involved and share your vision for the future to honor the fierce advocates who came before us, and the change-makers that will lead us forward.

Alone we are rare. Together we are strong.