Author Archive

Hadley’s Hopeful Heart

By Maryjo Baker, Hadley’s grandmother Boise, Idaho Being a grandmother is one of the best parts of my life. My husband and I moved to Boise 15 months ago so we could spend time with our daughter, Marcu, son-in-law Ben and their girls Stella and Hadley. Watching my daughter with…

How Video Strengthened Our Circle of Hope

By Kristen Murray & Nathan deBruyn Alberta, Canada It was a passing comment that gave us the idea. A fleeting conversation with a colleague, imbedded with a concerned query about Seth. “Hey, are you guys still giving Seth all of that medication that you were giving him a while back?…

Fore a Cure Golf Tournament Monday, October 17, 2016

Thank you to our many dedicated sponsors, event underwriters and attendees for making the Natalie’s Wish Ninth Annual Fore a Cure Golf Tournament at Pelican Hill Golf Club the most successful tournament to date. Because of you we raised an incredible $441,055 for cystinosis research! 100% of your donations will go directly…

2016 CRF Day of Hope Family Conference

Held Thursday, April 7 Through Saturday, April 9, 2016 at the Island Hotel, Newport Beach, California  We are excited to share a report on the CRF Day of Hope Cystinosis Family Conference as reported by Stephen Jenkins, MD and CRF Board Member. Stephen, his wife Ashton and sons Sam and…

Raptor Pharmaceutical Receives FDA Approval of Expanded Label for PROCYSBI® to Treat Children Aged 2-6 Years with Nephropathic Cystinosis

NOVATO, Calif., August 17, 2015 – Raptor Pharmaceutical Corp. (NASDAQ: RPTP) today announced that the U.S. Food and Drug Administration (FDA) approved the expanded use of PROCYSBI® (cysteamine bitartrate) delayed-release capsules to treat children two to six years of age with nephropathic cystinosis. The approved supplement was based on efficacy and safety data…

Fore a Cure 2014

The Natalie’s Wish Fore a Cure Golf Tournament, celebrating its seventh year, had another record-breaking event at the exclusive Santa Ana Country Club.  Led by its dynamic chairman Vince Ciavarella, a powerhouse golf committee, an amazingly dedicated group of volunteers and the generous sponsorship support of more than 200 companies…