Another ALD Connect Annual Meeting and Patient Learning Academy is in the books, and I’m still riding the high of being surrounded by so many incredible people! This year was particularly special for me because I attended with Mymom and Anna and I had the honor of attending as a member of the ALD Connect Board of Directors. It’s a role I don’t take lightly, and I couldn’t be prouder to be part of an organization doing such extraordinary things.
$400,000 awarded to two exciting research grants, another $40,000 to emerging investigators, and more than $53,000 raised at our annual auction! Those aren’t just impressive numbers they represent hope, progress, and a whole lot of people working toward the same goal. It represents hope that someday (soon) an ALD diagnosis will no longer come with fear.
There were wonderful additions to this year’s meeting, including a happy hour hosted by ALD Connect’s amazing ambassadors and a Friday night patient/family dinner. As much as we love talking science (and believe me, there was plenty of science), sometimes the most important conversations happen over a glass of wine (or a few), a shared meal, some tears, and a really good laugh.
And the people — Doctors, researchers, industry leaders, the OGs who helped build this community, families just beginning their ALD journeys, and representatives from incredible ALD organizations from here in the States and around the world. Different backgrounds, different experiences, different languages, but one common mission – to educate, to support, to provide community and to find a cure for ALD!
I also had the opportunity to speak. Life Between Appointments: Finding Purpose, Joy and Community While Living with ALD. Between my skirt almost tripping me as I got to the podium, my computer acting tricky and a large crowd of people I respect staring at me, I may have been a little clumsy, but I managed to get through it. I even managed to get the entire crowd to close their eyes as I walked them through a wonderful therapeutic exercise. I was happy to have given everyone a little break from the intensity of the two days.
What struck me most about this year’s conference was how united and strong this community feels. There is something incredibly powerful about being in a room full of people who understand what ALD can take from us, AND are determined to fight for everything it hasn’t.
We have come so far. There is still work to do, but the momentum is real, the connections are stronger than ever, and the hope is contagious. A cure is coming. I don’t know when, but after this weekend, I believe in that possibility more than ever.
Until then, we’ll keep showing up, supporting one another, raising money, pushing science forward, and, of course – allowing ourselves to cry when necessary and laugh whenever we can.
On our way home I got further proof that this community is remarkable. As I got through security at the airport I felt for my driver’s license that was in my pocket, my laptop bag on my shoulder and my iPhone in my hand. I took a few seconds to figure out what I was missing . . . my purse. The next two hours were a flurry of phone calls to figure out where it was and how to get it to me. I posted on social media asking if anyone was at the hotel and within moments, I was getting texts from folks willing to help. The bag was found by our lovely Uber driver who returned it to the hotel to the hands of a dear friend from the ALD community who happens to live in the Garden State. Today I’ve received another dozen asks if everything is okay and if I need any help. It’s been beautiful but not a surprise.
Because that’s what this community does. And I am so incredibly proud to be part of it!
ALD = Crappy Disease + Great People!
Love, Jess
