Events & News
CRF Natalie's Wish Upcoming Events
Day of Hope - CRF Family Conference
Thursday, April 10 - Saturday, April 21, 2012, Balboa Bay Club, Newport Beach, California
Learn, laugh, share and celebrate for three exciting days at the 2012 Cystinosis Research Foundation Day of Hope Conference and Natalie's Wish celebration at the beautiful Balboa Bay Club. Join top cystinosis researchers from around the world along with other cystinosis families for a fun and exciting weekend. All conference sessions, conference meals and the Natalie's wish event on Saturday night are free for cystinosis families.
Past Events
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.
Day of Hope Inspirational Star Messages - The Star Book is filled with wishes for a brighter future and the messages of hope are universal. We hope you will join us next spring and experience the hope and inspiration within the cystinosis community.
Natalie's Wish Event, Saturday, May 21, 2011 Raises $1.6 million for Cystinosis Research. There was much to celebrate with the launch of the Cure Cystinosis International Registry and the Phase 3 Clinical Trials underway for the delayed-release cysteamine.
A Day of Hope – May 1, 2010
Our first Day of Hope gathering was an inspirational and informative day for over 70 family members and friends in the cystinosis community. Eight of the CRF-funded researchers presented cutting-edge research on the effects of cystinosis in the eyes, kidneys, muscles, and brain, plus updates on the delayed-release cysteamine and stem cell therapy. Read more here and view event photos here.
Natalie's Wish Event Raises $1.3 Million - April 30, 2010
The CRF raised $1.3 million at the ninth annual Natalie's Wish event on Friday, April 30th at the beautiful Balboa Bay Club in Newport Beach, CA. The celebratory event brought together 300 guests, including 17 families of children and adults with cystinosis. Read more here and view event photos here.
October 5, 2009 - 3rd Annual Fore A Cure Golf Tournament Raises $165,000 for cystinosis research.
April 8 & 9, 2010 - Irvine, CA - Second International Cystinosis Research Symposium
CRF Partner Events
September 14 - September 23, 2011 - On-line Auction to benefit Cystinosis Research Foundation - Joshua's Journey of Hope will be auctioning off a number of fun and unique certificates gathered from San Franncisco to San Diego and throughout the southern California area. With more than 230 items, you will find special bargains from surf and swim lessons to wine and wine tasting tours, tickets to Disneyland, San Diego Zoo, Legoland, exotic vacations and much more. Visit the auction website and shop early for the holidays, and support cystinosis research! www.BiddingForGood.com/JoshuasJourney
Update - Real Men Can Cook Raises $30,334 for Cystinosis Research!
Update - Geno Bonnalie Shatters Previous Guinness World Record!
June 11, 2011, Lewiston, ID - The 3rd Annual Wine, Stein & Dine raised an extraordinary $82,000 for cystinosis research. Rogers Toyota Showroom was the venue for 400 guests who gathered in support of Tina's Hope for a Cure sharing an evening dedicated to friends, community and to finding a cure for Tina and others with cystinosis. Tina's Hope for A Cure
April 16, 2011, Wake Forest, NC - The Addison's Angels Foundation held its first event, Toast for a Cure, in honor of 2 year-old Nicole Cox and raised more than $5,000 to help find a cure for cystinosis.
April 1st - 2nd, 2011 - 24 Hours of Schweitzer- The 3rd annual event, held in honor of Henry Sturgis, was a huge success, although the weather was formidable, the ski teams raised more than $90,000 for research.
March 24, 2011 - Sacramento's Association of Commercial Real Estate (ACRE) Charity Benefit & Broker of the Year Awards Dinner to benefit Jenna & Patrick's Foundation of Hope was a tremendous success raising more than $285,000 for cystinosis research!
Archives
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