Entries by PHRF

Emma’s Fun Day in PA

Dover Township family raises funds for rare genetic disorder A Saturday event in Dover Township will fund research on Pitt Hopkins syndrome. By ANGIE MASON Daily Record/Sunday News Updated:   07/26/2013 05:55:24 PM EDT York, PA -The family of a 2-year-old girl with a rare genetic disorder is holding a fundraiser Saturday in Dover Township […]

Good Housekeeping: Making a difference

Committed to a Cause: 5 Women Who Are Making a Difference Get inspired by passionate women across the country who are helping raise money and build awareness for causes near and dear to their hearts. By Angela Kwan   Published on-line in Good Housekeeping, July 24, 2013 Theresa Pauca Her cause: Pitt Hopkins Syndrome (PHS), a rare […]

Cal’s Cabaret brings in 17K for research

Williamstown Theater Festival to host ‘Cal’s Cabaret’ to raise money for Pitt-Hopkins research By Josh Stilts, New England Newspapers Posted:   07/01/2013 11:12:05 AM EDT WILLIAMSTOWN — Ira and Fran Lapidus of Williamstown had never heard of Pitt-Hopkins Syndrome until roughly a year ago when their grandson, Calvin, was diagnosed with it. An extremely rare […]

Race for Rylie in PA–11K!

On June 22nd, over 200 participants showed their support for Pitt Hopkins Syndrome at the 4th annual Race for Rylie event held at Nockamixon State Park in Pennsylvania. The three main events included a 5K, a 1 mile kid fun run, and a non-competitive walk all happening along Lake Nockamixon with beautiful views of the […]

Walk for Olivia–4 girls raise our spirits in MI

Families from Michigan, Wisconsin, and Indiana represented the 4th Annual Michigan 5K and it was a spectacular day! With the sun shining upon us, Olivia, Jessi, Lilly, and Adalyn kept our gracious supporters smiling. What a blessing, to touch peoples lives and have them touch yours. The human kindness, community spirit, and the abundance of […]

Benefit for 4-year-old Beloiter

Benefit for 4-year-old Beloiter  Posted: Thursday, June 20, 2013 4:00 pmBy Hillary Gavan hgavan@beloitdailynews.com   Adalyn Chadwick: 4-year-old Adalyn Chadwick was recently diagnosed with Pitt Hopkins Syndrome. Papa Murphy’s Pizza is hosting a fundraising event Monday from 4 – 8 p.m. The family of 4-year-old Adalyn Chadwick is inviting the community to buy a Papa Murphy’s Pizza between […]

Against the odds

Against the odds:  Girls in the same class share rare genetic disorder The News Herald, The Voice of Downriver, Southgate, Michigan Published: Wednesday, June 19, 2013, by Andrea Blum   Imagine having a child diagnosed with a rare genetic disorder shared by only 250 others worldwide. Now imagine running across one of those other people in […]

Experimental & Molecular Medicine article, Dr. Sweatt

Citation: Experimental & Molecular Medicine (2013) 45, e21; doi:10.1038/emm.2013.32 Published online 3 May 2013 Pitt–Hopkins Syndrome: intellectual disability due to loss of TCF4-regulated gene transcription Open J David Sweatt Department of Neurobiology and Evelyn F. McKnight Brain Institute, Civitan International Research Center, University of Alabama at Birmingham, Birmingham, AL, USA Correspondence: Professor JD Sweatt, Department of Neurobiology, University of Alabama at […]

Groves family fundraises in the UK for PTHS

  They said she would never walk or talk… look at her now 18 May 2013 by Kelly Williams MOST children’s first steps are a momentous occasion – but for little Isabella Groves it’s a breakthrough.One of only 200 people in the world to suffer with a rare genetic condition, medics said she may never […]

Super Siblings in Neverland

This article was written by the Pauca family, sharing their daughters’ journey of having a sibling with special needs (PTHS).  It appears in the Spring 2013 Exceptional Child magazine, (pages 16-17 online) a publication of the Piedmont Parent, North Carolina. Victor Pauca may age, but in many ways, he may never have to grow up. So his […]