Entries by PHRF

Make a Hero.org: Henry

‘A Mother’s Hero:  Henry’s Hope’, by Nicole Lenzen September 5, 2013 http://www.makeahero.org/blog/a-mothers-hero-henrys-hope-by-nicole-lenzen/ September 5, 2013 “My hero, Henry, was born on August 17, 2007, my third boy.  He was healthy although smaller than my other children (birth weight of 5 lb 12 oz), he was otherwise perfect and beautiful. It was not until he was […]

Team Henry and Anna

Anna Martinez, Henry Lenzen’s special education teacher at Fox Hollow Elementary in Aurora, Colorado, will be treating Henry to his first ever running race on September 7th.  The Broncos Back to Football race is a 5k during which Anna will push Henry in a running stroller.  Drawing inspiration from Team Hoyt, Anna is hoping that […]

Nikkie Chadwick organizes T-shirt sale, raises $14,660

With September 18, 2013 being the first ever Pitt Hopkins Syndrome Awareness Day, I figured t-shirts would be the best way to help spread awareness. A customer of mine that owns a trophy shop offered to make PTHS awareness day t-shirts at cost, so that $10 of each sale could go to the research foundation. […]

St. Marys, Ontario, Canada declares 9/18 Pitt Hopkins Awareness Day

Taking a lead role in Pitt Hopkins Syndrome research Stew Slater, News editor http://www.southwesternontario.ca/community/taking-a-lead-role-in-pitt-hopkins-syndrome-research/ Southwesternontario.ca Thursday, September, 05, 2013 – 9:09:10 AM Slater photo Three members of the Hainer family of St. Marys pose on Tuesday, Aug. 27 with Mayor Steve Grose, following a decision by Town Council to officially proclaim Sept. 18 as Pitt Hopkins […]

Ascension Parish proclaims 9/18 PTHS Awareness Day

Parish President proclaims Sept. 18 as Pitt Hopkins Syndrome Awareness Day in Ascension Parish Updated Aug. 22, 2013 @ 10:13 am GONZALES – Ascension Parish President Tommy Martinez proclaimed Sept. 18, 2013 as Pitt Hopkins Syndrome Awareness Day in Ascension Parish. President Martinez read the proclamation aloud during the Aug. 15 parish council meeting in […]

Fletcher family sponsors fundraiser and raises awareness

Fundraiser set for Sept. 14 for Pitt Hopkins Research Foundation The Bedford Times-Press, Iowa By Nicki Lock,  August 21, 2013 On Saturday, September 14 a walk will be held in honor of Ian Fletcher, son of Trevor and Jessica Fletcher, at the Bedford High School Track to raise funds for the Pitt Hopkins Research Foundation. […]

Carter & Seth: Double the Laughter and Love

Health Source–August 2013, Jacksonville, Florida Jacksonville’s Leading Medical Publication | HealthSource Magazine   by: Virginia J. Pillsbury   Waking up to the sounds of giggles every morning is one of the best parts of being a mom, according to Tiffany Patten, mother of five-year-old twin boys, Seth and Carter. “They love to snuggle and they […]

PTHS Awareness interview, Nolen’s family

Here is a wonderful interview by Jason, father of Nolen, and his doctor, Dr. Menzies, in Iowa.  In this interview, Jason speaks about his son, Nolen, to bring awareness and understanding about Pitt Hopkins syndrome, and to also promote a Walk for Ian in Iowa on September 14, 2013.  Nolen’s physician, Dr. Menzies, gives an […]

Jenn & Hallie in the news for Caroline’s Carts

ABC-FOX Montana MISSOULA – Posted: Aug 12, 2013 8:02 PM EDT By Emily Foster    Video:  Caroline’s Carts Make Shopping Easier – ABC FOX MONTANA NEWS, WEATHER, SPORTS – KTMF/KWYB Shopping may seem like a simple task for most people, but for someone with a disability, a trip to the supermarket can be filled with […]

Lizzie’s cousin, Millie, raises funds for research

  Elizabeth Jennings. 15, left, and her cousin Millie Jennings, 9, right play Chutes and Ladders together at Jennings home Friday in Burlington. Jennings has Pitt-Hopkins Syndrome which is a very rare genetic disorder. Jennings has started a fund raising effort to help with research for Pitt-Hopkins Syndrome. Photo by Sam Roberts / Times-News By Molly […]