Rare Pictures of Hope™ – Submit Your Hope Photo Today!
When one of our parent advocates re-posted a picture she found with our slogan, “Hope. It’s in My Genes!” we never imagined it would have the effect that it did. There have been more than 700 photos posted to Facebook since last week! Each and every picture touches a string in our hearts and we [...]
PKU and the Adventures of Luke and his Incredible Family
Luke was born February 12, 2007, the seventh of our beautiful children. At four days old we received a phone call that Luke’s new born screening was showing an inborn error. So we were sent to Johns Hopkins that same day where we learned Luke had PKU, or phenylketonuria. Being the 7th of our children, [...]
USA Today Spotlights FDA Approval
Advocating for your children can and does make a difference! On March 6, USA Today published an article spotlighting a brave family with twin girls suffering a rare and fatal genetic disease. Niemann-Pick Type C disease, often called childhood Alzheimer’s disease, has brought the Hempel family through rigorous challenges and constant battles in an effort to keep [...]
It’s a Wrap – World RARE Disease Day 2012
GLOBAL GENES PROJECT E-NEWS DANA POINT, Calif. – The 5th Annual World Rare Disease Day took place February 29, 2012 with a fanfare of activities worldwide! Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased attention and engagement than previous years. Once again, Global Genes Project™ helped support and [...]
World Rare Disease Day: A Stunning Show of Support Across The Miles
February 29 was not just another day for the family of a boy named Hayden with ASLD or Adenylosuccinate Lyase Deficiency. HOPE traveled across the miles of the Mississippi Delta to as far north as Kentucky down south through Tennessee, Arkansas, Missouri and Louisiana. It was an incredible show of support for Hayden and all [...]
First-of-it’s-kind iPad Communication App
Gwendolyn Strong Foundation (theGSF) launches first ever iPad Communication App The demand for health information on the web continues to increase. With the utilization of digital products in healthcare, trends toward technological solutions in improving our health is gaining momentum. For those in the Rare Disease Community dealing with physical limitations precluding them from engaging [...]
NIH Supports Global Genes Project and Jeans/Genes Awareness Efforts
Over the past two years, the Global Genes Project efforts have been highly visible at the NIH for the annual World Rare Disease Day events. In 2012, we presented Dr. Francis Collins and Dr. Steve Groft with a Rare Pictures of Hope™ photo book made by thousands of rare disease advocates. In 2011, Nicole Boice, [...]
Zak’s Promise
“Opening Doors” For Prader-Willi Syndrome My wonderful son Zak was born with a rare genetic disease called Prader-Willi Syndrome (PWS). Although my wife and I may not have felt lucky at the time, we now know that we were blessed with good fortune when Zak was diagnosed as a newborn. Kids were mostly being diagnosed with [...]
Patient Stories of Hope and Inspiration – ‘Meet Riley!’
‘MEET RILEY!’ I have seen many things in the past four years since Riley’s diagnosis. Most of them have been while walking the road we are on. I have watched my daughter fight to overcome so much, beating the odds, SURVIVING, fighting back from setbacks and complications. She is my inspiration! Being on this journey [...]
Patient Stories of Hope and Inspiration – ‘Meet Samantha’
‘MEET SAMANTHA!’ I was diagnosed with Cystinuria in November 2010. I had problems from August 2008, but was not believed until I had an actual blockage that September. I was stented, but due to being scared and doctors cancelling appointments on me the stent was left in for over a year. I had no more [...]