ONLINE GOLF & DINNER REGISTRATION FORM · 4 October 2008
Golf Tournament · 4 October 2008
2008 Tournament sign up trifold.pdf [179.00KB]
"Tournament Information and Sign Up Sheet"
Golf Ball Drop 2008.pdf [179.00KB]
“Golf Ball Drop Entry Form”
Click on Golf Tournament Online Registration link on the left side of this page to register.
The Hailey’s Wish 2008 Golf Tournament will be held at the beautiful Tijeras Creek Golf Club.
For more details about Tijeras Creek visit their website at: www.tijerascreek.com
Tijeras Creek is located at 29082 Tijeras Creek Rd., Rancho Santa Margarita, CA 92688. Phone: 949-589-9793
Tentative Tournament Details
10:30-12pm Golfer’s Arrive and Register
12:00pm Golfing Starts
4:30pm-5:00pm Golfers finish up course & return to clubhouse
5:00pm-6:00pm No Host Cocktail Hour
5:30pm – HELICOPTER GOLF BALL DROP – be sure to enter the golf ball drop raffle! See online flyer above for details.
5:45pm – Buffet Dinner and Awards Banquet Begins
To our Potential Donors & Golf Particpants
A Note from Hailey’s Grandma
Dear Prospective Donor,
This year, as we look forward to the 2nd Annual Hailey’s Wish Golf Tournament to raise funds for Mitochondrial research and education, we again extend our appreciation to all who contributed to last years uplifting and successful event!
Hailey was our “Little Sunshine”. Her courage, will and spirit inspired us to create Hailey’s Wish in her honor after she lost her life in April of 2006 to Alpers Syndrome, a fatal form of mitochondrial disease. First described by Dr. Bernard Alpers in 1931, it wasn’t until 2004, over 70 years later, that researchers at UCSD found the gene used to develop the first DNA test for Alpers Syndrome. If not for this test, we may have never known why we lost our precious, seemingly healthy Hailey. Over the past two years we’ve transitioned from being a family who felt so alone with a mystery disease, to one that has learned we have more company than we could ever imagine.
Mitochondria are cells in the body that create 90% of the energy our bodies need to support growth and sustain life. There are hundreds of mitochondrial diseases with no known cures, many are fatal. They can occur at any age but are commonly seen in infants and children. Sadly, many may die undiagnosed.
With your help and support, we hope to eliminate the mysteries of Mitochondrial Diseases. This can only be accomplished through donations for research which is the key to discovering the clinical causes of these diseases. Developments can include finding causes, providing additional diagnostic and genetic testing, as well as developing more effective treatments. Educating the public and medical community is imperative, as initial symptoms are frequently overlooked or misunderstood.
Whether you donate a product for silent auction, participate as a golfer, join us for our dinner banquet or send a donation, you will be helping to achieve our collective goals of raising awareness and finding cures for these insidious diseases that are not rare, just very difficult to diagnose.
Thank you for your consideration and we hope to see you at the Golf Tournament! We seek your assistance to make this event a success.
Sincerely,
Carol Cavlovic
Haileys Wish is Awarded Google Grant · 2 July 2008
Google has awarded HaileysWish.org the prestigious Google Adwords Grant to assist in the mission of Hailey’s Wish.
With Google’s assistance HaileysWish.org is helping to improve research and education for mitochondrial diseases.
Dr. Jose Abdenur gives Hailey's Wish board members a tour of his CHOC Laboratory · 1 April 2008
We were invited by Dr. Jose Abdenur to tour the Metabolic Department Laboratory at Children’s Hospital of Orange County in Orange on April 1, 2008. Dr. Abdenur is the Medical Director of Metabolic Services at CHOC and the PSF Chief of the Metabolic Disorders Division.
Currently the Metabolic laboratory has the capability to run a limited number of tests to assist in getting rapid results for patients at CHOC. The time it takes to coordinate and then ship a lab sample for testing can delay a test result by weeks. Aquiring better testing equipment for the CHOC laboratory is only one of many ways your support will help!
And to our surprise, hanging on the wall, in the hallway of the laboratory was a large abstract of a clinical evaluation of Hailey’s medical journey. It turns out that Dr. Abdenur presented Hailey’s story at a conference to hundreds of medical professionals. His ability to share with this audience the facts of Hailey’s case and how her medical symptoms and lab work did not correlate to what he knew to be true about Mitochondrial Disease is just outstanding. It shows the medical community that mitochondrial diseases have many varying symptoms for the same disease so it is important to keep an open mind and realize there can always be exceptions to the rule.
Pictures of our tour will be posted shortly, stay tuned.