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 [...]
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 [...]
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, [...]
Take Action: Tell Congress Rare Diseases Patients Deserve Treatments
Tomorrow is a day of celebration, but TODAY is a day of ACTION. More than 70 patients advocates are on the Hill today meeting with Members of Congress. Please join them in the Lobby Day by taking 10 minutes to call your Representatives and ask them to support efforts to spur lifesaving treatments for rare [...]
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 [...]
Christopher – Growing up with Hunter Syndrome
Raising Awareness for MPS II When he was 6 years old, Christopher Dutcher was diagnosed with Mucopolysaccharidosis II (MPS II), commonly referred to as Hunter Syndrome . Remarkably, at the age of 28, Christopher has a dual MBA in Marketing. This is remarkable because many of those affected with Hunter Syndrome can have a significant [...]
Christian Billingsley: “Waiting for Medical Science to Catch Up”
On February 7, 2012, WWL-TV, the CBS affiliate in New Orleans, reported on Christian Billingsley, a 17-year old boy diagnosed with atypical hemolytic uremic syndrome (aHUS) at 3 months of age. Online Story Just Keep Him Alive Until Medical Science Catches Up (click on title/link above to see WWL-TV video) Doug Mouton / Northshore [...]
Patient Stories of Hope and Inspiration – ‘Meet Sydney!’
‘MEET SYDNEY!’ Life couldn’t have been more perfect. My husband and I had great jobs, we bought a house in the country and we had 2 healthy twins, a boy and a girl. Life was good. We moved to our house when the kids were 2 years old. A year later, life as we knew [...]
Meet Madison – A Family’s Fight Against Carbamoyl Phosphate Synthetase Disease
Madison Sonja Van Leeuwe was born on Christmas Day 2009 after a normal labor and delivery. After an uneventful hospital stay, Madison was discharged home two days later. Only a matter of hours after she was home, Madison began having difficulties breathing and started turning blue. She was rushed through a Minnesota blizzard to the [...]