World Rare Disease Day Successful Event: Jorge & Perla Portillo Throw Newport Beach Luncheon


Screen Shot 2016-03-15 at 11.22.18 AMPerla Portillo is a mom on a mission. Along with her husband, Jorge, the couple hosted an event in honor of their oldest daughter, Alanis. She is a beautiful 13 year old girl who has a rare, genetic disorder.
“We still don’t have a proper diagnosis for her after all these years, but we are hopeful.  When Alanis was born, she was unable to see, hear, and was very weak.  At her younge age of 1, she began to sit up, at 2 she began to crawl, at 4 1/2 she began to walk. She is still non verbal and we are hoping that her voice will come soon. She is a blessing to us and brings joy to us all.  Since day one, we have been her voice and support and will continue to do so for her and all who are affected by these rare and genetic diseases,” says Perla about her and husband, Jorge.  “Just like her progress has been slow but sure, so has the medical field been in finding answers for Alanis and children like her. Jorge and I have been advocates for Alanis and rare disease Since day one. “
This year, for World Rare Disease Day, Perla organize a luncheon that became a great success.
“I was a bit nervous about the whole event, I didn’t know if I would even have anyone show up, or if I would even raise any money. We had so many families show up to lend their support,” says Perla with great relief.  “The event was on Saturday, February 27th, at Red O of Newport Beach. We had a silent auction that included several great items.”
Winning items included:
  • A day of golf for 4 people at Pelican Hill Golf Club.
  • Red O donated a $100 gift card, a signed cook book by Rick Bayles, Tequila, and other items.
  • Soul Cycle of Newport Beach donated a 5 session Spinning class, a cute tote bag and two tea shirts.
  • Equinox gym donated a month pass to their gym.
  • Piato healthy meals donated a week food delivery.
  • Jeanni Champagne boutique donated a cute basket filled with a $50 gift card to their shop, $50 gift card to mustards cafe,  denim shorts, scarf, brallete, tank top, champagne, & champagne glasses.
  • We also had Amoderm Wellness Center donate 8 signature gold facials each valued at $120. Each that we used for a raffle.
  • Sarah Jebreil DDS from Newport Beach donated a teeth whitening service that we also used for our raffle. along with swag bags that were also used for our raffle.
Every guest also went home with a thank you bag from Global Genes.
Flowers were donated by Screen Shot 2016-03-15 at 11.22.28 AMNewport Florist as well as Tyler Gipe donated his photography service for the luncheon.
“Our objective was to bring our community together to bring awareness to Rare Disease. To stand together and support each other,” said Perla. “We have a wonderful community that cares about rare! This luncheon was also a fun time for parents and couples to have fun, have a great laugh, and to let people know that it’s okay to enjoy life, no matter what may come our way.”
Perla’s Newport luncheon was a great example of how parents and patients can plan events that can really get into the spirit of awareness, while making real change in the industry at the same time.

Filed Under: Global Genes, Global Genes Events, Global Genes News

Tags:, , ,

Global Genes Comments

  1. Would love to bring you all to Louisville ky one day in name of our son cody lane brueche he’s missing 4 and partial trisomy 16 only child on record I can find and he’s alive off vent and now home after a 8 month stay in kosairs children’s hospital I’ve walked the halls of the nicu the break rooms had local news outlets cover him had benefits in his name handed out a couple thousand ribbions just to express my passion to rare disease I’m just a godly country boy but I’ve done so much for yall and our Cody they counted him out and the Lord answered my prayers as Dr Austin a heart surgeon found a arterial ring around his trachea and he’s home after living since birth there but as you know only cody knows where Cody’s going you guys were are support at times through this website love yall and keep up the good work and hope to advocate enough to get you guys to Louisville with us ! https://m.facebook.com/Caring-for-Cody-404576859735573/

Speak Your Mind

*

be-a-guest-blogger

Follow us on Twitter

Upcoming Events

Sep 14

RARE Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

RARE Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

RARE Patient Advocacy Summit

September 15 @ 8:00 am - 4:30 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 5:00 pm - 9:30 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

RARE Day of Beauty

September 16 @ 12:00 pm - 5:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm