Once again, it was a great privilege for me to attend the Natalie's Wish Fundraiser in Newport Beach last week. Since 2003, the annual event for the Cystinosis Research Foundation has raised more than $8.3 million, all of which is being used to fund research to develop better treatments and a cure for the rare, genetic and slowly fatal metabolic disorder that afflicts about 2,000 people, mostly children, worldwide.
Natalie Stack is 17 and has suffered from the effects of Cystinosis since birth. She is certainly an inspiration but what strikes me as most remarkable is the impact that she and her entire family have been able to have on this disease. They are committed to all aspects of finding a cure: raising money for research, being directly involved with organizing the medical community, engaging an extremely supportive group of friends and bringing together others who suffer with the disease.
It is hard to convey the energy, spirit and motivation among the entire group who attend this unique event. So I will stop there and just say that you should strongly consider attending next year.
For more information about Natalie’s Wish and the Cystinosis Research Foundation, call Zoe Solsby at (949) 223-7610 or visit www.natalieswish.org
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