We can't believe it's been almost three weeks since the race for Victor and Pitt Hopkins Syndrome!! What a magical and happy day that was for us. We could not have dreamed of anything better.
The race was a great success. Being our first race, we expected maybe 50 participants and to cover our costs (spreading awareness of Pitt Hopkins Syndrome being our key goal). Instead we had around 110 participants and raised $4,000 in total ($3,300 after costs). A family in Pennsylvania with a daughter with Pitt Hopkins syndrome and a family in Michigan also with a daughter with Pitt Hopkins syndrome held races on the same day. It was a beautiful day too for all three races and it seems everyone enjoyed the trails we had set up at Historic Bethabara Park. The three races together raised a total of $15,000!
The Pitt Hopkins Family Network, our website portal for families, is growing and will soon be translated to other languages. We are in the process of developing an informational brochure to be distributed to genetic counselors and genetic testing labs in the US and Europe. We want all new diagnosis of PTHS (especially those for very young children) to be referred to us for information and support. (We have, since the day of the race, received three more families from Italy into our group.) This brochure and many other endeavors for families will be supported by the Pitt Hopkins Syndrome Fund.
Victor walked 370 yards, all the way to the Potter's House! He is going into training to double that distance next year :)
