A MESSAGE FROM Jax and Sophie Run NYC!
[Logistical note: This website is set-up as Jax's individual donation page. However, we are combining our fundraising efforts onto this single site with a total goal of $10,000. Sophie does have a page, but it's just for registration purposes. All of the donations through this link support our combined efforts. Thank you!!!]
In April 2023, we ran the London Marathon together for Team Hospice UK. Hospice care was a lifeline during the final chapter of Sarah's (Jax's mom) life. Sarah died in June 2018 after years of living with Cortical Basal Ganglionic Degeneration, a rare brain disease that went misdiagnosed for close to four years. Those lost years mattered. A correct diagnosis sooner could have changed a great deal about how her last years were lived. She moved from Charleston to Michigan in December of 2016 to be closer to Jax and the boys, and we are so grateful for that time. She was sharp, funny, passionate about social justice, and she loved her family, birds, cats, and the water. Fittingly, NORD was among the organizations listed for memorial donations in her obituary.
Running for NORD feels like completing a circle. Sophie brings her own constellation of reasons to this team. She is a physical therapist in the Trauma Burn ICU at Michigan Medicine, and rare disease has touched her life from multiple directions. She has watched a dear friend's son navigate Batten Disease, a family who has fought with extraordinary grace and creativity to raise awareness. She has also been a support person for her friend Jenn, who was diagnosed with Lymphangioleiomyomatosis, underwent a lung transplant at the hospital where Sophie works, and she continues to fight every day.
Between the two of us, we have seen what happens when a disease is rare enough that the funding is thin, the research is slow, and families are left to become their own advocates and educators. We've seen what a difference it makes when the awareness is there, when someone knows what to look for, what to call it, who to call. That's what NORD does. They drive policy, accelerate research, and work to improve care for the more than 30 million Americans living with one of over 10,000 rare diseases.
And through the Running for Rare Community Partner program, each of us will be paired with someone living that reality, so that every mile we run is connected to a specific story, a specific person, a specific life.
We are aiming to raise a combined $10,000, and we'll be leaning on the networks we've built in the worlds of healthcare, nonprofit, endurance athletics, and advocacy. We exceeded our fundraising goal when we ran London in 2023, and we intend to do the same in New York.
If you've ever supported us before, thank you. If you're new here, welcome. Every dollar goes directly toward work that matters deeply to our family.
Jax (Fish) & Sophie (Chips)
