United to Beat Disease

I like to surround myself with people smarter than I am. While some people might find it intimidating, I find it thrilling to witness brilliance and like the challenge of trying to blend in. And, if I know I’m really out of my league, I’m the first to state the obvious before anyone else shines the light on me.

I was born into a family full of great minds and learned early on that I could either run and hide or enjoy surrounding myself with people that I knew KNEW more, did more. I’m not saying that I’m less then, lazy or stupid. I blame some learning disabilities that made school difficult when I was younger. It’s hard to build on knowledge that you never really learned because you were struggling with the last lesson. By the time I broke the code of my dyslexia, there were some giant holes in my education. There are a few things that I will never know. I beg you not to EVER test me on the Civil War or basic Chemistry.


This brings me to the last two days where Jack, Maria (Jack’s right-hand lady) and I attended the CPSA (Clinical & Pharmaceutical Solutions through Analysis) USA 2018 Symposium. We had the opportunity to represent ALD Connect with a patient perspective of our disease. I stood in front of a room filled with brilliant minds and talked about the one thing where I feel completely confident that I AM a master – my family.

The other speakers at the conference all seemed to own their information. No one had note cards or stumbled over the multi-syllable words that I had never heard before. I, on the other hand, walked to the podium with not one copy of my 18-point-font speech, but two — you never know when one will get lost;) My slides didn’t have any fancy facts or graphs. Instead, mine were all photos of our family throughout the years. I wanted to make sure that I managed my goal of putting a face on the disease that has effected our family. It might not have been the smoothest start, but once I got through the initial awkward moments, I looked over at JackO and knew that I could get through it.

I might not have understood all the science being discussed in the room, but I know what our disease looks like through the eyes of a parent – something that can’t be taught in a classroom.

The room was filled with scientists representing pharmaceutical and bio-tech companies and universities. Most introduced themselves adding where they worked or what specific projects they were working on. “Jack’s Mom” is the title that I shared as I shook people’s hands. It might not sound cool, but it’s a title that I’m honored to wear.

There have been times (years even), where I would run away from being surrounded by people with such great minds, but besides the science talk that had me wondering if english was actually being spoken, I truly enjoyed meeting all these people and being part of something that states it’s goal as “United to Beat Disease”.

As we were leaving the conference, we were given warm hugs and thank yous, “We came here for the science, but we leave as a family.”  I know it sounds silly, but I got a little teary. This is not the journey I would have ever imagined for our family, but every time we share our story, I feel like we’re doing something important AND we’re taking some power away from ALD.

Thank you Alla, Mike, Florian, Suzanne, Emily and Kathleen for trusting me and letting us be part of this incredible event.

Love, Jess

United to Beat Disease: Partners in Healthcare, Partners in Science, Partners in Technology and Innovation.


7 thoughts on “United to Beat Disease

  1. Jess, There just are no words for me to convey to you the esteem in which I hold you. You and your family were given a challenge. Then you accepted the Grace to handle that challenge with LOVE, with brilliance, with awesome dignity. I simply stand in awe.
    Love, Eileen

    Liked by 1 person

  2. This was a beautiful read and I thought for a minute you were writing my story regarding school struggles as a child, and also preparing to be in a room filled with specialists and having to speak about ALD & your experience. My son is only 2, but has the ALD gene mutation, which we found out thankfully through newborn screening in CA. I’ve done 2 speeches so far to help in a little way to share my experiences thus far. I follow your blog and I love your positivity and strength. It helps me with my emotional stress worrying about my son’s future. Thank you for your help! Kerri

    Liked by 1 person

    • I am so impressed that you are finding the strength to educate. Your family is the new face of our disease and I know that your story will be a great one. You have the power of knowledge! PLEASE stay in touch and keep me posted AND if you are willing to share your story on my blog, I would love to share it. Let me know.


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