Last week I went to the Aidan Jack Seegar Foundation conference covering ALD Newborn Screening and Identifying ALD Standards of Care. I sat up straight and took copious notes for two days, but I’m having trouble making sense of the legal pad filled with my chicken scratch. Honestly, its ten years into our ALD journey and I still don’t fully understand all the ins and outs of our disease. What I do understand is that I enjoyed every second of being at the conference. Two days full of people who are fighting our disease — doctors, researchers, and parents — many of whom I’ve never met in person, but I’ve followed for years.
Since Smiles and Duct Tape was published, I’ve had the confidence to participate more in the ALD community. I’d always felt that I wasn’t doing anything important enough to justify attending these events. I thought I needed a medical degree or to have started a foundation or raised enough money to pay for new trials. It seems silly now – who is more connected to the disease then the families living with it in their home? And, having ALD families at these conferences is a reminder to all those doctors and researchers in the room WHY they are doing what they are doing.
Attending these events has also made me feel oddly powerful. Like I am taking some control away from the three letters that have defined our family for ten years. I’m now connected with people making change and hope to do my part to help the cause. I have a pile of people who I can contact right away if I have questions or concerns, meaning I no longer need to rely on Google being my primary source for information – this is a good rule for most things 😉
I am also grateful for all the ALD families I’ve gotten to meet in person thanks to attending these events. Our family is blessed with a huge circle of friends and family who are always there for us, but when I’m sharing a table with ALD people, it’s different. They understand in a way that non-ALD folks can’t.
We are connected as soon as we reach across the table and shake each others hand (in fact, it’s usually a sloppy, over-familiar hug because we are so excited to meet in person). We each have a story about when we first learned the word Adrenoleukodystrophy. We each have experienced needing to share information with extended family who is sometimes not completely willing to except the information. We have each wondered what will happen to our sons as the years march on. We’ve each poured through our family history looking for markers of the disease. We each find ourselves looking in the mirror and wondering what the disease will do to our own bodies. We all know what it’s like to get lost in the what-ifs. We all know how to fight our way out of the ALD hole in honor of our sons . . . or in memory of them.*
It was an intense two days, but it wasn’t all crying and feeling sorry for ourselves. There were some tears, but mostly it was two days of learning about the progress being made in diagnosing and treating ALD. Two days of learning things that may help people with ALD and of empowering each other to move forward and help the cause. I feel stronger than I’ve felt since Jack was diagnosed. Sharing Smiles and Duct Tape, THIS is ALD stories and going to these conferences — I’m educating myself, educating others, taking some power back, and making amazing friends along the way.
I am going to post more information about what I learned at the conference as soon as I can sort out my notes. Anna joined me on Friday and she can help me make sense of things – thank goodness we have a science person in the family!!!
Promise – there is some signing and giving and maybe even marching to be done!
*I focus on childhood/cerebral ALD, but ALD comes in a variety of phenotypes – Asymptomatic, Addison’s Disease, AMN. Look for upcoming THIS is ALD stories to learn more.