Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising three beautiful children. Despite achieving success in operating their loan company, the Spooner’s have faced greater challenges and discovered even greater meaning in their lives through the caring of three daughters, two with a rare and physically debilitating disease.

Of the three daughters, two were each diagnosed at only eight months old with a rare genetic disorder that disallows them to lead normal lives. In addition to running a business together, Rick and Cristyn juggle the needs of their three daughters, two daughters both of whom have trouble walking and talking.

“The Spooners represent the 35 million in the U.S. who are in constant battle with a rare disease,” said Nicole Boice, president and founder, Global Genes and R.A.R.E. Project. “Seventy-five percent of those affected are children, such as the Spooner’s daughters.  This brings home the need to raise hope among these families and assure them they are not alone in their day-to-day struggle.”

To help families such as the Spooners, R.A.R.E. Project (Rare Disease, Advocacy, Research and Education) has launched The Global Genes Project to raise awareness and funding for rare disease research globally.  By using a micro-donation website, R.A.R.E. Project aims to achieve the goal of raising financial support  to establish quality disease databases; drive analytical research; fund peer reviewed multi-disease projects; impact policy and collaboration; and fund disease research foundations.

“Rare disease is not rare and that there are millions of parents like Rick and Cristyn advocating on behalf of their children with little to no broad support,” said Boice.  “Rare disease affects more people globally then any other disease, more than AIDS and all cancers combined.”

More than 35 million people in the US suffer from rare diseases. This figure is significantly larger when compared to 28 million people with cancer worldwide and 1.2 million people with AIDS in the US.  Fifty percent of rare diseases have little or no individual advocacy group driving awareness and support. In the last 25 years, only 350 new drugs for fighting 7000 rare diseases have approved by the FDA.

R.A.R.E. Project exists to raise rare disease awareness, unify, equip and empower a vibrant global rare disease community and fund innovations to support ‘in-their-lifetime’ rare disease research.

For more information, please visit www.rareproject.org.


Global Genes loves their city! See the many ways that GG has affected the RARE community is Orange County and learn how you can support their efforts on Orange County’s very own day of giving April 21st! Don’t want to wait till the 21st to support GG? Donate Now!


 

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