Last month, I received a note from a dear friend (and a founding member of ALD Connect), that made me pause, breathe, and let out one of those slow, grateful exhales that seem to come from a place deeper than my lungs. I had been invited to join the Board of Directors of ALD Connect.

If you’ve been walking this road with us since the early days of our ALD journey, you know that our story with ALD began in crisis, confusion, and fear. Back then we were reacting, scrambling, hoping, praying – alone with nothing but Google to provide us information about the disease.

In those early days it felt like we were drowning. The waves came fast and without warning. Diagnosis, transplant (just 30 days after the diagnosis), fighting through transplant, adapting to new disabilities, finding doctors who understood (or were even willing to learn) about our disease, finding schools that could educate Jack, figuring out what life would look like stained with ALD. We were blessed to have a community of friends and family who supported us during that time – we are forever grateful – but something was missing. We craved people who understood our disease. People who had lived it.

I often say — and I believe it to my core — that without community we are all just treading water in rough seas. Community is a life vest.

It took time, but eventually we found our life vest. A huge part of our life vest came to us through ALD Connect. It started with a DM in 2016 from that board member who shared the news about me being added to the Board. She reached out to share that she had read Smiles and Duct Tape and, “I hope you don’t mind. I’ve shared it with everyone … I may harass you later about your interest/willingness to participate in a webinar about transplant experiences next year…or maybe speaking at a future Patient Learning Academy”.

She did ask me to participate, and over time ALD Connect and its community became a huge part of our lives. It’s been a place where I could get information and be held up when needed. AND, it became a place where I could give back, advocate, and show up for other families navigating the same storm. ALD Connect provided us with other patients/caregivers who lived this life AND doctors and researchers who were treating and fighting our disease. ALD Connect provided us a community who understood ALD symptoms – people who knew the words phenotype and chimerism and knew what long-chain fatty acids were. The blog grew, my advocacy work grew, my counseling path grew, and our connections grew. Every single thread of support stitched together the lives we have now.

To now join the Board feels both humbling and deeply personal. It feels like a full-circle moment — one I never expected when I first typed shaky updates into this blog so many years ago or first shared our story in front of a room full of people.

It also feels like a wonderful FU to ALD.

I am honored (and maybe a little intimidated) to be joining the Board with two other new members – an incredible endocrinologist and a father whose son was diagnosed through newborn screening in 2024 and has raised an enormous amount of money directed towards essential research on our disease. What I hope to bring to the board is simple. Heart. Perspective. Honesty. The voice of a caregiver. The voice of a woman living with ALD. The belief that connection can transform a crappy diagnosis into something survivable — something held together by many hands instead of one.

I’m honored. I’m grateful. I’m committed.

My life vest is on. Here’s to the work ahead!

Love, Jess