Entries by PHRF

Univ. of California-San Francisco opens Pitt Hopkins Clinic

UCSF Pediatric Clinic Focused on Rare Pitt Hopkins Syndrome is Third of its Kind in the World By Juliana Bunim on September 02, 2015 http://www.ucsf.edu/news/2015/09/131486/ucsf-pediatric-clinic-focused-rare-pitt-hopkins-syndrome-third-its-kind-world UCSF Benioff Children’s Hospital San Francisco has opened the third Pitt Hopkins Syndrome (PTHS) clinic in the world, giving patients with this rare genetic condition access to an interdisciplinary team […]

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UPenn Million Dollar Bike Ride 2015

  While most sequels disappoint, the second annual Million Dollar Bike Ride for Rare Diseases proved to be a huge success.  A beautiful sunny day in Philadelphia was enjoyed by our incredible team of Pitt Hopkins Pedalers racers.  And $40,000 was raised for scientific research!  The icing on the cake — all will be matched […]

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Research Interview with Drs. David Sweatt & Andrew Kennedy

Interviewer: Audrey Davidow Lapidus, PHRF President, and mom to Calvin Those of you who are new to Pitt Hopkins and the Pitt Hopkins Research Foundation might not be aware of the work accomplished by Dr. David Sweatt at the University of Alabama, Birmingham. Dr. Sweatt was our first funded researcher and the first laboratory researcher […]

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First ever Give Rare Day: $38,805

First ever Give RARE a huge success! Through the persistence and hard work of our entire Pitt Hopkins community, the families of Pitt Hopkins raised over $38K for the Pitt Hopkins Research Foundation through Give Rare Day on March 3rd! The rare disease community came together for 24 hours of generosity. Thousands of people across […]

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My Why: Ella Schilling

  By: Brian and Michele Schilling What happens when you or someone you love is diagnosed with a rare genetic syndrome? What if there was so little information about this rare syndrome that not even the doctor delivering the diagnosis knows what it is or what the future holds? What if this was your child? […]

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My Why: Seth and Carter

“400 in the world… and I have TWO. That is why I fundraise.” –by: Tiffany Patten For years I knew something was “wrong” with my twins, Seth and Carter, but no doctor could tell me what it was. I was determined to find an answer. What mother could be satisfied with a label of “undiagnosed”? […]

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Dedicated to Rylie: The Amazing, Awesome Alphabet

Author Cindy DeLuca surprised the Maginn Family when she told them her new book, The Amazing, Awesome Alphabet, would be dedicated to their daughter, Rylie. Cindy is a retired special education teacher and was a coworker of Rylie’s mom. “She could have dedicated her book to anyone but she said Rylie with her beautiful smile […]

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Make a Difference…Join the team in 2015

Dear Pitt Hopkins Family, It’s New Year’s, the time of year when many of us reflect in the hopes of making this year better than the last. And for special needs parents, it’s filled with questions. Will this be the year? The year that my child takes his first steps? Speaks his first words? Will […]

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2014 Research awards given, totaling $430,000

The Pitt Hopkins Research Foundation is committed to directly funding the most promising research available in the world to help find a treatment and ultimately a cure for Pitt Hopkins syndrome. Fall 2014:  The PHRF awarded four research grants and two additional research grants through UPenn Million Dollar Bike Ride.  A total of $430,000 awarded […]

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