Last weekend, our family hosted an ALD Connect…ions gathering at our home. The invitation was simple: come swim, eat, talk, laugh, and spend time with people who understand life with ALD.

Folks came from as far away as Pennsylvania (thanks Ken). The weather cooperated beautifully. The pool was sparkling. The food was plentiful. We planned for a four-hour gathering. Eight hours later, people were still sitting around the patio telling stories. So much for the schedule!

One of the things I love most about our community is that conversations can move seamlessly from MRIs and adrenal insufficiency to travel plans, embarrassing poop stories, and even stories about injuries not related to ALD (next time you see Kelly ask her to show you the “shark bite” photo).

ALD can be isolating. Whether you’re living with ALD, caring for someone with ALD, or love someone affected by it, there are moments when it feels like nobody else could possibly understand. And then you find your people. You find the people who don’t need long explanations. The people who understand the language, the worries, the victories, and the losses. The people who can sit with the hard stuff and still laugh until everyone’s stomach hurts.

At one point during the afternoon, I looked around at the group and thought, this is exactly why community matters! Not because we all share the same story (ALD has many different phenotypes). Not because it makes ALD disappear. Not because it solves every problem. But because it reminds us that we don’t have to navigate any of it alone.

I attended my first ALD Connect conference 9 years ago and it was a life-changer. It felt like meeting lost relatives. Although I appreciated all the medical talk about treatments and research, what I really loved (and realized I REALLY NEEDED) was time with other ALD patients and caregivers. It was the meals and the breaks and the happy hours that provided me with the real gift — community.

But once a year was not enough!!! The ALD Alliance conference added another date on my calendar that included time with community (it’s such a great organization and their conference is always incredible), but still I craved more. I wondered, Do we need a conference to be with our people?

I was not alone.

ALD Connect is encouraging more ALD Connect…ions events. Whether it’s a backyard barbecue, a cup of coffee, a walk in the park, or a gathering around a pool — find your people. For a rare disease, we’re not SO RARE — current numbers show approximately 1/15,000 are affected by ALD. Soooooo, find the folks who understand — and make a plan. Then reach out to ALD Connect at info@aldconnect.org and they will send you an application to help off-set the financial end of the connection!

Our family will plan another event again before too long – stay tuned for details!! AND, don’t forget that this year’s ALD Connect Annual Meeting and Patient Learning Academy is in Salt Lake City November 6-7. I promise that it will include a whole lot of connecting!!!!

Community doesn’t cure ALD — But it sure makes the journey a lot better!

And, do not worry, there is also a lot of research happening too — END ALD!!!!!!!!!

Love, Jess