To most of our community, she was a warrior, the Face of Cannabis, a symbol of hope, and a trailblazer. And she was. She struggled, she suffered, she overcame, she learned, she changed minds, and she laughed. But to me, she was more than a symbol. She was the sweetest little girl with an adorable belly laugh who loved her mama, adored her twin sister Chase, followed her big brother Max, and giggled with her dad.
Charlotte was just three years old when we first met her. Even then, she and her mom taught us how to soldier through this crazy world. Paige was the inspiration for the hiking backpacks that allowed us to seek the roads less traveled here in Colorado.
Charlotte had Paige wrapped around her little finger in the most beautiful way: Keto, g-tube hydration, art therapy, the search for solutions to clusters of seizures that plagued both her and Aiden. I suppose there was. Not the solutions themselves. For Charlotte, her first seizure started at 4 months old just before her mom picked her up from daycare after painting her bedroom in the new house that her family was about to move into.
That seizure lasted around 45 minutes, but seemed like hours to her parents. After a general diagnosis of epilepsy, several doctors and several medications later, Charlotte was finally diagnosed with Dravet 4 years later.
The delay in diagnosis is attributed to the rarity of the disease; a factor which has also severely limited the availability of successful therapeutic strategies to treat these children.
The clinical picture of the Dravet spectrum corresponds to disease severity and may range from mild seizures to continued seizures that last for hours. Charlotte experiences severe cognitive impairment as a result from her continued bought with seizures. While some of these therapies do provide benefit, we endeavor to find a therapy or suite of therapies that can be developed to specifically help Charlotte and other children who have Dravet syndrome. Charlotte is a fighter. Conventional DSF uses a hydrophobic fluorescent dye that binds to proteins as they unfold.
NanoDSF measures changes in intrinsic protein fluorescence as proteins unfold. Plex instrument from NanoTemper Technologies with aggregation optics. ThermControl for thermal stability data collection, PR. ChemControl for chemical stability data collection, PR.
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