In late 2015, we had a discussion at the PPMD office in Hackensack. Was it time to kick our local educational events up a notch? Have we certified enough centers to have a “home base” across the country? Do we have enough evolving content to make in-person local educational events happen more often? Can we rely on our family, clinical, academic, and industry partners to help us do this well?
On April 16, 2021 the PPMD End Duchenne Tour turns five, and we are so glad we said yes to all of the above.
Over 1,200 family members, 750 households, 250 families new to PPMD, and 850 professionals, local Duchenne experts, industry partners, and resource providers later, I am still thankful, humbled and enamored at everything you are.
Our First Tour Stop
The tour, which we coined the “Every Single One Tour” when we began this journey, had the goals of reaching members of the community across the country in an intentional, informative, and interactive manner while also fostering a sense of camaraderie and support between families, local Duchenne experts, support resources, and the PPMD network. It was the perfect union of our then FACES Roundtables and our Annual Conference.
Unsure of just how many members of our Duchenne community would gather together to share their Saturday with us, we took the Amtrak to Baltimore on a sunny afternoon in April and so began the tour – hoping to meet new families, facilitate new connections and continue to unify our ultimate mission – to end Duchenne. Opening to a full house, we couldn’t have asked for a more enthusiastic and passionate group of participants to launch with!
36 Stops Later
Here we are, five years later, and we’ve hosted 36 tour stops, 27 of which we’ve had the absolute privilege of traveling to and seeing you in person. To come together in a small setting with care providers who are some of the most amazing brains we’ll ever know. To bring new members into our family. To bring new friends together.
To bring hope, and love, and direct and honest information to each other. To share tricks and tips and resources that we might have never known otherwise. To recruit runners into dozens of races with our Race to End Duchenne team, mobilizing (quite literally) to raise much needed funds and awareness in the fight to end Duchenne.
And, what we now have come to know as the most precious thing, to spend time with each other. Because sometimes, that is the perfect antidote to everything we face on this journey together.
* Make sure you are signed up to receive emails from PPMD to be notified when registration opens for these upcoming tour stops.
Tomorrow, we’ll “be” in Louisville, KY — virtually (and there’s still time to register!). Five years later we need to use quotes when we say “we have been” or “we are going” or “see you there”.
There’s a comical element to when I look at when we planned our first “remote” tour stops in Billings, Montana and one specifically for our Spanish-speaking families, years before the pandemic and social distancing entered our lives. Then, grand plans to expand to “live streaming” in 2020. Joke is on us, I suppose, as nine “remote” events later, we are well conditioned to this whole virtual world.
Simply put, we cannot wait to see you again. No quotes. But, for now, we remain incredibly thankful for you, the most resilient, passionate, and strong people that we will ever know.
Thank you for being with us, and we’ll see you soon.