Blood and stool samples for five different protocols were collected within the span of two hours at the HPS Network 25th Annual Conference, held March 9 – 11 in Uniondale, N.Y.

“This project had several logistical challenges,” says Valarie Friedman, RN and Medical Director of the HPS Network, “We were able to work with our members, and the researchers, to overcome those challenges and make this happen.” People with HPS are visually impaired, and thus to ensure informed consent, consent forms needed to be produced in large print or read to potential participants. The second challenge was that the blood needed to be spun and frozen within a short time frame after collection.

Despite these challenges, 38 people submitted blood samples, four submitted stool samples, 96 tubes of blood were drawn and informed consent was obtained for all samples.

“How can I expect a cure if I don’t do anything to help accomplish that goal?” says Jessica Maldonado, one of the research participants.  “I’ll do everything humanly possible to help the doctors, if not for me, then for those beautiful children in our HPS family.”