Monday, February 6, 2017

Denim & Diamonds Fashion Show To Benefit Global Genes for World RARE Disease Day

Denim & Diamonds Fashion Show To Benefit Global Genes


Celebrities Madison McLaughlin and Shaka Smith Join Models to Walk the Runway in Support of World RARE Disease Day - for Global Genes on February 28, 2017 at The Resort at Pelican Hill.


With out getting too emotional about this, I want to just say that I support the discovery of, research of and assistance towards RARE Diseases. 

Having a close friend that I grew up with call me and tell me that her newborn has issues processing proteins and other things going on, opened my eyes a bit to a whole new world of things, things that a newborn had no way of getting through on her own. 

The support and love given to my friend was incredible and all to help her help her baby. There are so many of us out there that know someone or may be the one that has a rare disease... a little research and support goes a long way...

You too can help raise awareness... help by sharing my post and giving others the opportunity to see what is being done locally here in SoCal for rare disease awareness!

In honor of World RARE Disease Day, Global Genes, a leading rare disease patient advocacy organization, is proud to announce the first-ever Denim & Diamonds Fashion Show on Tuesday, February 28, 2017 at The Resort at Pelican Hill in Newport Coast, California. Produced by Newport Coasts’ own rare disease parent advocate Perla Portillo, models will walk the runway in honor of loved ones affected by rare disease on World RARE Disease Day. Celebrity guests, Madison McLaughlin (Arrow) and fitness model Shaka Smith, will join models on the runway in support of rare disease awareness.

All proceeds from Denim & Diamonds will go directly to Global Genes’ RARE Patient Impact Grant, an exclusive funding opportunity for rare support groups and RARE Foundation Alliance patient organizations. The program provides critical medical equipment, family therapy, sensory equipment, sports programs, genetic testing, special outings for children with rare diseases, and much more. In 2016, over 17,000 patients and caregivers had their challenges of living with a rare disease reduced through the RARE Patient Impact Grant Program.

“Rare diseases affect 1 in 10 Americans and 350 million people globally,” said Nicole Boice, Founder and CEO of Global Genes. “The need to eliminate the challenges of rare diseases is tremendous and Denim & Diamonds is an exciting way to show support for the community on World RARE Disease Day!”

Parent advocate and Denim & Diamonds creator, Perla Portillo, is a past recipient of a Global Genes Grant. Global Genes provided genetic testing and support groups for her daughter, Alanis Portillo. Though her daughter’s condition is still undiagnosed, Perla is certain that will change with the support of Global Genes.
“There are many more, like Alanis, who still need help,” comments Portillo. “Support for Denim & Diamonds and involvement in World RARE Disease Day will allow Global Genes to help make a real, lasting impact to many more families and patients in need.”

The Denim & Diamonds Fashion Show will showcase top denim collections from popular brands including Ella Moss, Freddy Jeans, Joseph Ribkoff, Miranda Frye, Ted Baker, Seven for All Mankind, Splendid, and Vitamin A Swim. Newport Coast’s high end contemporary clothing, shoe, and accessory boutique, Jeanni Champagne, is providing clothing and will style the looks for the models.  Social Dry Lounge will provide hair styling and Brax Jewelers is providing jewelry for the models.

The Denim & Diamonds Fashion Show will take place on World Rare Disease Day, February 28   at 6:30 p.m. at The Resort at Pelican Hill located at 22701 S Pelican Hill Rd, Newport Coast, California. Tickets start at $100 per person with VIP and table purchases available. For more information, to donate, or purchase tickets visit http://bit.ly/DenimandDiamonds17

Happy to share and support, 
Penny