Kids with HPS to learn circus tricks

Kids may dream about running away to be in the circus, but kids from the Hermansky-Pudlak Syndrome (HPS) community will get to learn some circus skills at the 25th Annual HPS Network Conference, to be held March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. A team from the National Circus Project will be on hand at the kids’ portion of the conference to teach them various circus skills such as juggling and rope tricks. The kids program includes children with HPS, as well as the...

Stem cell expert to present on Science Sunday at the 25th Annual HPS Network Conference

Dr. Konstantinos D. Alysandratos, MD, PhD, will present on Science Sunday to the HPS community at the 25th Annual HPS Network Conference, March 9 – 11, at the Long Island Marriott in Uniondale, N.Y. His presentation will help us understand what different types of stem cells are, and how they might relate to current and future research on Hermansky-Pudlak Syndrome. He will be giving a more scientific presentation to Meeting of the Minds, an invitation-only HPS researcher meeting held the day...

Research volunteers with HPS 3 or 6 needed

The HPS Network is looking for volunteers with HPS types 3 or 6 to participate in a hematology study. Participation involves having blood drawn and then shipped to the researcher performing the study. To learn more, contact HPS Network Medical Director Valerie Friedman at:

A Run Through History raises money for HPS Network

  Approximately 80 runners and walkers participated in A Run Through History in Oyster Bay, NY in October, 2017. The event was a fundraiser for the HPS Network and another Oyster Bay, NY-based non-profit helps preschoolers with disabilities integrate into their community through activities and play dates. Joey Bertolini, the son of long-time HPS Network volunteer Kerri Bertolini, won the race. Laura and Molly Friedman, daughters of HPS Network Director of Medical...

Appells speak at Sarah Lawrence College

Donna Appell, President and Founder of the Hermansky-Pudlak Syndrome (HPS) Network, and her daughter Ashley Appell, spoke to a class of soon-to-be genetic counselors at Sarah Lawrence College in early December. The focus of the class was genetics in pediatrics. Donna Appell spoke to the students about the value of non-profit patient organizations as referral agencies. She spoke about the resources organizations, such as the HPS Network, can provide to counselors, as well as their patients. Not...

Treasured HPS Network volunteer Ann-Delia Bayer passes away

Ann-Delia Bayer, a longtime volunteer with the HPS Network, passed away on Dec. 9th, 2017. She is survived by her husband Robert Bayer and her daughters Katrina and Sarah as well as her brother Timothy (Stacie) Valentine and his children Corrine and Jena. Bayer was actively involved in HPS Network events, even though no one in her family was affected by the syndrome. For a decade she managed the kids’ dance party on Friday night at the HPS Network conference. The party gives kids affected by...

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