WVLA NBC33 | Baton Rouge News, Weather and Sports | Baton Rouge News 10,000 dollars raised to help rare syndrome that affects 250 worldwide: one case right here See video: 10,000 dollars raised to help rare syndrome that affects 250 worldwide: one case right here | WVLA NBC33 | Baton Rouge News, Weather and Sports […]
The 1st PTHS Moms Retreat was held in Winston-Salem, North Carolina, November 15 – 17, 2013. The theme of the retreat was Connect, Learn, Collaborate and Rejuvenate, and was designed in the hopes that during these 3 days we would strengthen our connections between PTHS moms, learn from our combined experiences, collaborate to help our […]
Fall 2013: Six Research Awards given, totaling $330,000 Dr. David Sweat, University of Alabama Birmingham $80,000; one year grant New Research Into the Neurobiological Basis of PTHS: Researchers at UAB will investigate the cognitive dysfunction associated with PTHS, focusing on the role of the TCF4 transcription factor in learning and memory formation. Scientists will measure […]
Thanksgiving and Pumpkin Pie just go together, right? So Eli’s family, in the middle of Canada, decided to hold a Thanksgiving Fundraiser for Pitt Hopkins Research to bake and sell homemade pumpkin pies, buttertarts and cinnamon buns. The response was overwhelming, with orders coming in, one after the other. Eli’s grandparents kept the neighbourhood smelling […]
St. Marys boy one of 250 people in world with Pitt-Hopkins Syndrome Boy with rare condition cuts path of awareness | The London Free Press By Laura Cudworth, The Beacon Herald Thursday, October 10, 2013 5:49:28 EDT PM Mitchell Hainer gets a kiss from mom Lynn in the family’s St. Marys backyard this week. (SCOTT […]
Family holds fundraiser to help fight rare disease http://www.whec.com Posted at: 09/29/2013 12:57 PM | Updated at: 09/29/2013 8:47 PM Family holds fundraiser to help fight rare disease | www.WHEC.com The Schilling family held a “bounce extravaganza” fundraiser on Sunday in Gates to fight against a rare disease. Ella Schilling, of Webster, is three years […]
The students at Bedford Schools in Bedford, Iowa showed their support for Ian and Pitt Hopkins Syndrome on September 18th by wearing wristbands and tattoos on the special Pitt Hopkins Awareness Day. The student council sold the wristbands, tattoos, and Spread A Smile cards, which students signed in support of Pitt Hopkins Syndrome. Each student […]
Four year old Rylie Maginn recently received a very important invitation! Invited by Pennsylvania Senator, Lisa Boscola, Rylie and her family visited the state capital building in Harrisburg on September 23, 2013 to advocate for Pitt Hopkins Syndrome. Senator Boscola gave a warm introduction of Rylie on the senate floor as she spoke about her […]
International Day of Recognition for Pitt Hopkins, September 18, 2013 By Taylor Hammerl | September 18, 2013 Permalink – International Day of Recognition for Pitt Hopkins Imagine a life in which your child is unable to walk or speak. A life in which you can’t begin to know what your child is thinking or feeling. Parents […]
BBC NEWS, WALES Isabella Groves’ parents urge awareness of Pitt Hopkins syndrome Elen Wyn reports, September 20, 2013 See link for video: http://www.bbc.co.uk/news/uk-wales-24172731?SThisFB A three-year-old girl from Denbighshire who suffers from a rare genetic condition has defied doctors’ predictions and started to walk. Isabella Groves, from Saron near Denbigh, is one of only 250 people […]
