Entries by PHRF

A happy life: Despite rare diagnosis, the Tewksburys move forward

http://www.petoskeynews.com/news/featured/pnr-a-happy-life-despite-rare-diagnosis-petoskey-family-moves-forward-20130919,0,2573908.story A happy life: Despite rare diagnosis, Petoskey family moves forward Rachel Brougham (231) 439-9348 – rbrougham@petoskeynews.com, September 19, 2013 His giggles are contagious. Once Zander Tewksbury, 2, starts laughing, his mom can’t help but laugh along with him. And as they cuddle together on the couch, Krystal Middaugh tickles her son’s belly even more. Happy […]

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Mirigliani family raises $2,888 for research with Lemonade stand, Mantua township declares 9/18 PTHS Day

The Mirigliani family raises $2,888 for research with a lemonade stand on Pitt Hopkins Awareness Day, September 18, 2013, Matua Township, New Jersey!   Mantua family to raise money for Pitt Hopkins Syndrome research with lemonade stand http://www.nj.com/gloucester-county/index.ssf/2013/09/mantua_family_to_raise_money_for_pitt_hopkins_syndrome_research_with_lemonade_stand.html Anthony Mirigliani, 9, of Mantua, was born with Pitt Hopkins Syndrome, a rare genetic disorder characterized by motor, verbal […]

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Routledge family article: One in 200,000, my son and his rare syndrome

One in 200,000: my son and his rare syndrome http://thesocialissue.com http://thesocialissue.com/2013/09/one-in-200000-my-son-and-his-rare-syndrome/ Posted on September 18, 2013 by Sue Routledge Most doctors and geneticists have not even heard of the condition that my 21-year old son Christopher has – Pitt Hopkins Syndrome (PTHS). Christopher was probably the first British person to be diagnosed with Pitt Hopkins Syndrome with the first blood test […]

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Make a Hero: Liz is my hero, PTHS Awareness Day 9/18/13

 “Liz is My Hero” by Judy Jennings (Pitt Hopkins Awareness Day 9/18/13) http://www.makeahero.org/blog/liz-is-my-hero-by-judy-jennings-pitt-hopkins-awareness-day-91813/ September 18, 2013 Liz is my hero. “Her journey through adaptive sports defines her persistence, determination, dedication, and concentration. For most in this world, training and competing in four sports would be enough of a challenge. For Liz, this is just shy of a […]

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Walk for Ian and PTHS raises $11,000+

The Walk for Ian and Pitt Hopkins held on September 14, 2013 in Bedford, Iowa was a huge success! We will be donating over $11,000 that was raised for Pitt Hopkins Research!  We had an amazing turnout, 250 people which included 4 PTHS families!  We were so glad that Nolen Parkin (Jason and Kelly’s son […]

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Jessie’s Journey with Pitt Hopkins Syndrome

Kelly’s Kidz Blog , Helping Families Help Each Other Jessi’s Journey with Pitt-Hopkins Syndrome   By kellyskidz | September 11, 2013 | Pitt-Hopkins Syndrome http://blog.kellyskidz.net/2013/09/jessis-journey-pitt-hopkins-syndrome/ Jessi’s Journey Jessi was born on November 27, 2007.  It was such a joy to have a little girl in our family and join her brother Jack!  Early on we noticed that Jessi struggled to meet milestones.  […]

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Mason’s story, in honor of PTHS Awareness Day

September 18th – Pitt Hopkins Syndrome National Awareness Day http://creativedirtpile.com/september-18th-pitt-hopkins-syndrome-national-awareness-day September 11, 2013, Posted in  Creative Dirt Pile  “The whole idea of compassion is based on a keen awareness of the interdependence of all these living beings, which are all part of one another, and all involved in one another.” – Thomas Merton   I love this […]

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Eli’s family raises awareness for PTHS in Kenora, Canada

Kenora Daily Miner and News http://www.kenoradailyminerandnews.com/2013/09/13/kenora-boy-diagnosed-with-one-of-the-rarest-genetic-conditions-in-the-world? Kenora boy diagnosed with one of the rarest genetic conditions in the world by Alan S. Hale Friday, September 13, 2013 1:52:33 EDT PM Eli Bird has an extremely rare genetic condition called Pitt Hopkins Syndrome; one of only a couple hundred people in the entire world with disorder. […]

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Urbandale, Iowa mayor declares Sept. 18th PTHS Day

Special day to shed light on Urbandale boy’s rare syndrome Only about 250 people have the Pitt Hopkins genetic disorder. DesMoines Register.com http://www.desmoinesregister.com/article/20130912/COMM/309120119/Special-day-to-shed-light-on-Urbandale-boy-s-rare-syndrome?Frontpage Sep. 12, 2013 , written by Todd Erzen    Nolen Parkin, 4, has has of Urbandale, 4, is one of approximately 250 people worldwide diagnosed with Pitt Hopkins Syndrome. A mayoral proclamation […]

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