CRF Natalie's Wish Events
Day of Hope - CRF Family Conference, Thursday, April 19 - Saturday, April 21, 2012, Balboa Bay Club, Newport Beach, California
Thirty-one cystinosis families from around the world traveled to the beautiful Balboa Bay Club in Newport Beach, California to hear comprehensive updates on the latest in scientific advancements for improved treatments and a cure for cystinosis. The conference included numerous activities for families to socialize and renew friendships and share their personal stories of life with cystinosis. Photos of the conference will be posted soon on our Facebook page. We are already planning next year's conference and we look forward to seeing you in 2013!
Wishes, Heroes and Miracles - Natalie's Wish Tenth Anniversary Celebration was held at the Balboa Bay Club in Newport Beach, California on Saturday April 21, 2012 and raised $1.75 million for cystinosis research.
The evening was launched with the announcement that the UCLA Institutional Review Board has approved the first allogeneic stem cell treatment protocol for cystinosis, clearing the way for the first clinical test of a potential cure. Additionally, research the CRF is funding at the University of California, Irvine, has raised hopes of reversing corneal cystinosis. These extraordinary developments highlighted CRF's first 10 years bringing us to the threshold of a cure and the first improved treatment in 35 years. More than 400 guests joined in the evening's celebration which included entertainment by the On Broadway performers, and an exciting live auction and fund a cure raising $516,000 and cystinosis families from across the globe, contributed $584,000 through their fundraising efforts to the evenings success. How will we top an event that many are calling "the best event I have ever attended"? While it is certainly a tough act to follow, we are already planning next year's celebration and hope you will join us on Saturday, April 20, 2013. Please view our 2012 video Wishes, Heroes and Miracles to learn more about cystinosis progress.
Fore a Cure Golf Tournament - Monday, November 14, 2011 - "We hosted 148 golfers, 47 sponsors and underwriters, at an elegant private golf course and clubhouse facilities and we had perfect weather. We raised more than $215,000 for cystinosis research, who could ask for more? " said tournament chairman Vince Ciavarella. We are grateful to our Silver Sponsors, Ben's Asphalt and SARES•REGIS Group along with Bronze Sponsors, Bank of the West, CBRE, Commerical Roof Management, Howard Roofing, Lee & Associates, Nelson Paving & Sealing, Oltmans Construction, RBA Builders, TLG Paving and Tucker Electric, many who have supported the last three prior events. Watch for event photos on our Facebook page and mark your calendars for Monday, November 5, 2012 and plan on participating next year!
Crash and Crush for a Cure!
What a night - thank you to all who support cystinosis research. We are grateful to Ben's Asphalt for choosing us as their charity. Watch the CRF "Natalie's Wish" car try to survive the derby! http://www.youtube.com/watch?v=WQfTs56_UaI
Visit our Facebook page to view images and videos of the conference and the Natalie's Wish celebration.
2011 Day of Hope - Cystinosis Research Foundation Family Conference
The Day of Hope Family Conference held May 19 - May 21 at the Balboa Bay Club in Newport Beach, California, was both inspirational and informative for families and friends of the cystinosis community from around the world. Leading cystinosis researchers and scientists provided updates for studies involving the eyes, kidneys, muscles and brain. Special reports were provided on the RP-103 progress by Raptor Pharmaceuticals, Corp., and Sigma-Tau Pharmaceuticals, shared information on the eyedrops and the FDA approval progress. Cystinosis families from Brazil, Sweden, Canada and the United States joined together to celebrate a weekend of hope and inspiration. Plan to join us next year, SAVE THE DATE April 19 - April 21, 2012.
May 1, 2010 - Newport Beach, CA - Day of Hope for Cystinosis Families and Friends
April 30, 2010 – Newport Beach, CA - Ninth Annual Natalie’s Wish Fundraising Event
October 5, 2009 - 3rd Annual Fore A Cure Golf Tournament - Coto de Caza Golf & Raquet Club
May 8, 2009 – Newport Beach, CA - Eighth Annual Natalie’s Wish Fundraising Event
November 21, 2008 – Newport Beach, CA - Jay Strongwater at Neiman Marcus - Champagne Reception
November 18, 2008 – Costa Mesa, CA - St. John Fashion Show at South Coast Plaza
November 10, 2008 – Coto de Caza, CA - 2nd Annual Fore A Cure Golf Tournament
April 8-9, 2010 – Second CRF International Cystinosis Research Symposium for Scientists & Researchers
November 1, 2009 – Autumn Research and Fellowship Grant Proposals Due
September 15, 2009 – Announce Autumn Call for Research Proposals
September 18, 2008 – Newport Beach, CA – Traditional Jewelers & Riviera Magazine Watch Event
July 25, 2008 – Costa Mesa, CA – David Yurman South Coast Plaza Fragrance Event
May 30, 2008 – Newport Beach, CA - Seventh Annual Natalie’s Wish Fundraising Event
April 3rd & 4th 2008 – Irvine, CA – The First CRF International Cystinosis Research Symposium
October 1, 2007 – First Annual Fore A Cure
June 1, 2007 – Sixth Annual Natalie’s Wish
May 1, 2007 – BOMA Orange County Charity Golf Tournament
November 9, 2006 – Diamond and Jewelry Extravaganza at Traditional Jewelers