Rally for Rafa

Our two-year-old twins, Rafa and Nico, keep our family busy, laughing, and full of joy. They have been side by side since birth, but their paths through childhood already look very different.

Rafa was diagnosed with Pitt Hopkins Syndrome last year. He is incredibly happy, social, affectionate, and determined. He loves music, being around people, and especially his brother, Nico. Rafa has to work incredibly hard for every new skill and also faces challenges with gastrointestinal symptoms associated with Pitt Hopkins. But no matter the challenge, his smile and enthusiasm have a way of drawing people in wherever he goes.

Rafa’s diagnosis connected us to a community we never expected to need but are so grateful to have found. It has also given our family a mission: to raise awareness and help advance research that could change what is possible for Rafa and others with Pitt Hopkins. Research gives our family tremendous hope. We dream of a future where Rafa has more opportunities to communicate, move independently, learn, and experience everything life has to offer. We know that Rafa and other children with Pitt Hopkins are growing up while this important work is happening. For our family, advancing research now matters. We raise awareness and fundraise for Rafa, for the Pitt Hopkins community, and for a future filled with possibility.

Please donate today in honor of Rafa and help move that future closer.

Time is running out…

Pitt Hopkins Awareness Day 

9-18-26

WeeksDaysHoursMinutesSecondsTODAY is Pitt Hopkins Awareness Day!

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