The Hope Code

Nathan and PMSF

Nathan is 18 years old. He was diagnosed with Phelan-McDermid Syndrome when he was just 16 months, and since then, our family has learned firsthand how this rare genetic condition can shape daily life. Nathan experiences high anxiety and sensory sensitivities, which make crowded or unfamiliar places overwhelming. Because of this, he’s currently in high school but attends virtually instead of in-person.

Nathan’s world is unique, but it’s also full of the same joys and quirks any teenager might have. He loves elevators, long car rides, typing games, and sweets. He has a quick sense of humor and a thoughtful way of expressing himself, through typing. When I was ten, I first learned to type with him. Watching his words appear on the screen felt both extraordinary and humbling. Typing gives Nathan a voice, and it showed me how much he had to share with the people around him. That experience changed me. It shaped how I see communication, empathy, and the importance of really listening.

I’m Nathan’s younger sister, and he has been one of my greatest teachers. Living alongside him has taught me patience and compassion in ways I don’t think I could have learned otherwise. During my freshman year of high school, I began studying genetics and behavioral health. That sparked a new sense of purpose, understanding more about my brother’s syndrome not only helped me connect with him but also fueled my interest in the science that could one day bring families like mine more answers and better support.

Phelan-McDermid Syndrome is still not widely known, but organizations like PMSF are changing that. They fund vital research into genetics and treatment, provide resources for families navigating daily challenges, and create communities of support where no one feels alone.

Supporting this fundraiser means advancing research and giving families tools they need to thrive. It means making sure voices like Nathan’s are not overlooked, and it means fueling hope for a future where more answers exist.

Thank you for taking the time to read Nathan’s story. Your generosity, whether through a donation or simply sharing this page, helps build a brighter path for people with PMS and the families who love them

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