In July, we were able to travel to Florida for the 2023 National Niemann-Pick Disease Conference in Orlando. The first day was spent checking in to our hotel and checking in with the conference and getting to know our new extended family, the NPC families. We were very impressed on the overall friendliness of the attendees as we all shared our journeys of how NPC has affected our loved ones. Friday we spent the morning at more meetings listening various NPC updates, various research projects, and medicated interventions now which are now made available to NPC patients. I am currently regretting not paying more attention in my biology and chemistry…

About a year before Morgan got her diagnosis of NPC she was diagnosed with Ataxia, a symptom of NPC, she started talking about and having dreams about wanting to beat a bear. We all laughed it off thinking that it was crazy to want to fight a bear in real life. But it wasn’t until recently that she wrote a beautiful monologue in her theater class about beating that bear where we truly understood what the bear (the disease) meant to her and it touched our hearts. “In a world where this one little girl wants to tackle a bear a specific black bear. She is big and bold but…

We got a chance to participate in our first clinical study at the National Institute of Health in Bethesda Maryland. We arrived at the Children’s Inn where after a long day of traveling we were excited to find somewhere to rest and hang out for the next week. The next day began bright and early with a consultation with Dr. Porter in which we discussed Morgan’s extensive health history in detail. The rest of the week Morgan participated in an array of tests these tests were long and lengthy lasting a whole week of continuous appointments from different professionals ranging from neuro psych testing, hearing and swallowing tests, blood work,…