Events Archives – Page 2 of 2 – Jordan's Guardian Angels

Swing for Charity Event Raises Hundreds of Thousands

Under brilliant blue skies, dozens hit the links in South Lake Tahoe for a good course: raising money to help Jordan’s Guardian Angels cure Jordan’s Syndrome, a recently-identified mutation on the gene PPP2R5D. And – it was an incredible success. Thanks to more than 80 sponsors and guests, the second annual Golden State Classic at Edgewood Tahoe raised more than $270,000!

We decided to add a little sizzle and fun to cocktail Party on Thursday night, so we created a $1 million hole-in-one contest. That’s right – 15 lucky sponsors were chosen out of the attendees to take a swing for $1 million dollars. One by one, they took their swings on the ninth hole, but wind coming in off the lake made for difficult conditions. We all had a great time watching them try their best!

Then, guests were treated to an update on our promising research progress, featuring a short video and an in-person discussion with Kyle Fink, Ph.D., from the UC Davis Institute of Regenerative Cures. Attendees learned first-hand about recent breakthroughs that show Jordan’s Syndrome is reversible.Watch the video below!

Then, it was time to swing for charity on a picture-perfect Friday morning. You may remember that golf was canceled last year due to unseasonal September snow, but this year, the fairways were pristine, it was 83 degrees, and we were back to making birdies instead of snow angels.

Matt Back and Terry Brennand tied for the GSC Angles Cup with 79’s. Matt Back won the Angles Cup Trophy in a playoff!

We want to thank our presenting sponsor, Norwood Associates, and our major sponsors, Altria, California Independent Voter Project, District Council 16 International Union of Painters & Allied Trades, and Walmart.

We also want to take a moment to appreciate our supporting sponsors: Aaron Read & Associates, American Beverage Association, Amgen, Boehringer-Ingelheim, BBC Public Affairs, Bob & Sara Giroux, Brandenberg Group, Buena Vista Construction, California Cable & Telecommunications Association, Capitol Alliance, Carter Wetch & Associates, California Beer & Beverage Distributors, CSEA, DaVita, Fanslau Government Affairs, Farmers Insurance Group, Fernandez Government Solutions, Five Star Bank, George & Wendy Miller, Larisa Cespedes, McHugh, Koepke & Associates, SEIU – Statewide, Sloat Higgins Jensen & Associates, Sycuan Band of the Kumeyaay Nation, Southern California Painters & Allied Trades – District Council 36, Uber, Villines Group, and Wayne Ordos, Attorney at Law.

Finally, we want to thank our legislative supporters: Assemblymember Ian Calderon (AD 57), Senator Anthony Cannella (SD 12), Assemblymember Heath Flora (AD 2), Assemblymember Adam Gray (AD 21), Senator Richard Pan (SD 6), and Assemblymember Phil Ting (AD 19).

It goes without saying, but we can’t continue our mission to cure Jordan’s Syndrome without each of your support. On behalf of Jordan’s Guardian Angels and our families around the world who will directly feel the impact of this inspiring generosity, thank you!!!

Events - 08/29/2018

VIDEO: Medical Investigators, JGA Team Reveal Research Progress

Events / Research - 08/20/2018

VIDEO: 1st Annual C3P-Go Gala Raises Hundreds of Thousands for Research

Events - 04/19/2018

1st Annual C3P-Go Gala Raises Hundreds of Thousands for Groundbreaking Research

The giving spirit was on full display on a night that surpassed even our most optimistic hopes and dreams. We are so incredibly excited and grateful to announce that thanks to our global community, the first annual C3P-Go Gala in Houston raised hundreds of thousands of dollars to help fund our research into finding a cure for Jordan’s Syndrome.

In all, $365,000 was raised, which will directly support the groundbreaking research that may bring answers for our children and potentially millions more. The event was organized by the Huber family, or Team Huber, as they are affectionately known. Their two-year-old son Hutton was diagnosed with Jordan’s Syndrome.

Attendees bid on everything from timeless sports memorabilia to sparkling jewelry in a silent auction. There were games and raffles aplenty. Inside the ballroom, we kicked off the evening’s festivities with a warm welcome from our lovely MC, KHOU meteorologist Chita Craft.

A live auction was held, where partygoers anted up for five-star getaways and more. One of our researchers, Dr. Ghayda Mirzaa, explained the potential behind the project, examining how Jordan’s Syndrome (a newly-discovered mutation in the gene PPP2R5D) is linked to autism, intellectual disability, Alzheimer’s and cancer.

In an inspiring moment for all, Jordan’s Guardian Angels co-founder Joe Lang was joined on stage by several of our families as he spoke to the audience about the need to help. What happened next was nothing short of stunning.

Our live auctioneer asked those in attendance to consider making a charitable donation – simply in the spirit of generosity. The response was as immediate as it was overwhelming, as dozens raised their paddles to contribute to our mission. By the time it was all said and done, we’d far exceeded our goal for the evening.

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“As I sat by the stage admiring all the clapping hands and the loving eyes fixated on our children, it became very clear that there is nowhere else I would rather be,” said parent Carole Backhos. “If Jordan’s Syndrome wasn’t part of our lives, what could I possibly be doing at that exact moment that would have had any sense of achievement and belonging? [I am] thankful every day for the meaningful life this journey has put us on.”

Internationally-known performance painter Michael Israel thrilled the crowd, turning blank canvases into beautiful art in a matter of minutes – a spectacular way to cap a night that we won’t soon forget.

It was an evening filled with fun, laughter and hope. Click here to view a full gallery of the evening's festivities!

Jordan’s Guardian Angels would like to thank the following families and businesses whose invaluable contributions made for a truly unforgettable night. We can’t begin to express our gratitude – and we are already looking forward to next year!

Sponsors:
The Fogg Family, Altivia, Wyatt Ranch Foundation, USI, Englobal, Holloman Corp, MOGAS Industries, CVA Tanks, Kendra Scott

Live Auction Donors:
The Brashiers, Andersons, Cleers and Foggs

Games, Raffle & Silent Auction Donors:
ARKANSAS: Bourbon & Boots

CALIFORNIA: Mike West & Paul Hermann

COLORADO: Crested Butte Mountain Resort, Mario’s Pizza & Pasta

FLORIDA: Amy Fogg Art

TEXAS: Athleta, Ciro’s Italian Grill, Chick-Fil-A, Consuelo Sierra, Doris Metro, Elaine Turner, Escape Room, Guadalajara Hacienda, Gunner Hook, Hallmark Memorial, Hotel Zaza, Houston Zoo, Kendra Scott, Lacy Cunningham (Rodan & Fields), Lash Plus, Ledge Loungers, Marilyn Biles Collection, Mr. Poppa Gourmet Popcorn Texas, Nice Winery, Paisley House, Paris Texas Apparel, Steadman West, The Southern Door, Total Wine, UrbanCHEF, Well Done Cooking Class

LOUISIANA: Andy’s Jewelry, Dave Hardy, Garrett Gauthier, Katie LeBlanc, Ken’s Coffee, Lauren McElligott, Maven, Nichols, Obagi (Alexis Joubert / Elizabeth McElligott), Perry Ste. Marie, Robert & Penny Leblanc, LeBLANC+SMITH, Snap On Tools, Swags & Tassels

KENTUCKY: Kentucky for Kentucky Socks, Mouth’s Candys

MAINE: Loohoo Wool Dyer Balls

OREGON: Bend Armoire Jewelry, Bend Nut Roasters, North Broken Top Candles, Cascade Lavender, Conscious Ink Manifestation Tattoos, Dani Naturals, Deb’s DeWine Design, Desperado, DIY Cave, Farmhouse Soy Candles, Hopped Up Jewelry, Hopscotch Kids, Justy’s Jellys, LeLeO Leather Ties, LoilJ Essential Oils, Meadowland Syrups, One Love by Panambi, Oregon Bath & Body, Paper Jazz, Pendleton, Savory Spice Shop, Silipint, Silverado, Skin First by Terese, Spiritopia, Spoke Bracelets, Steena’s Suds, Sweet Mama’s Soap Co., Van Heusen, Vintner’s Kitchen, Wild Roots Vodka

Events - 04/17/2018

Image Gallery: 2018 C3P-Go Gala

Events - 04/16/2018

Rare Disease Day: Children Around the World With Rare Genetic Mutation Share their Journeys on Facebook Live

Incelebration of Rare Disease Day, families from around the world with children diagnosed with a rare genetic mutation potentially linked to autism and Alzheimer's disease, more commonly known as Jordan's Syndrome, connected on Facebook Live to spread their message and stories.

"As a lot of our families have experienced, at the time that we got the first diagnosis, the lab that had done the exome sequencing really said, 'We think you might be the first child in the world,'" said Joe Lang, founder of Jordan's Guardian Angels. "Now, through divine intervention and lots of other things, we are now 54 families strong. As it started to unfold, we started to realize that this is about more than just our children."

The families were joined on Facebook by California State Senator Richard Pan (D-Sacramento), who submitted Senate Resolution 109 today with California State Assemblymember Rob Bonta (D-Oakland) to commemorate Rare Disease Day and highlight Jordan's Syndrome, a mutation in gene PPP2R5D.

"I have submitted a resolution recognizing today as Rare Disease Day, co-authored by a colleague of mine in the State Assembly, Rob Bonta," said Senator Pan. "Our investment in rare disease really has benefits for all of us. Certainly, on one level, it's about recognizing the importance of rare diseases and the families that struggle with them, but it's also recognizing that we all have a stake, together, in children and people with rare diseases, and that the research that is going into this isn't just benefiting those individual families - it's benefiting all of us."

"We need to be sure that families know that there is hope, and that the people of the world are behind you," Senator Pan added.

Click here to watch Senator Pan's livestream of the Rare Disease Day event.

Click here to watch PPP2R5D's livestream of the Rare Disease Day event, hosted by Carole Bakhos of Denver, CO.

Events - 03/05/2018

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"Superheroes on the Move" Event Brings Families Together, Raises Thousands

Teaming up with a pair of superheroes, dozens of families were on the move to raise money for our groundbreaking research into Jordan's Syndrome. The Superheroes on the Move event held last Saturday in the Phoneix area raised more than $4,000!

More than 90 people took part in the walk, which was led by Captain America and Wonder Woman. Three families with children diagnosed with Jordan's Syndrome – Avianna, Ava, and Yara – joined in the festivities.The family-oriented event featured a bounce house, as well as a raffle with donations from the W Scottsdale, Waxing the City Tempe, Kendra Scott Scottsdale, Laser Away Chandler, and a gym membership from Desert Fitness Mesa.

We were also thrilled to be joined by several vendors, including Pawsitive Friendships, a Phoenix-area organization that provides animal-assisted therapy to children with special needs. Thank you to everyone who came together to make this event so special!!

Events - 02/28/2018

Jordan's Guardian Angels to Host Global Facebook Live Event on Rare Disease Day

On February 28th, Rare Disease Day, families from around the world with children diagnosed with a rare genetic mutation potentially linked to autism and Alzheimer's disease, more commonly known as Jordan's Syndrome, will connect on Facebook Live to spread their message and stories.

WHO: Families from around the world with children diagnosed with Jordan's Syndrome, including Carole Bakhos, Nancy DeOrta, Joe Lang, Fernando James Plata, and Malinda Burke

WHAT: Rare Disease Day with PPP2R5D Families on Facebook Live

WHERE: Watch live on Facebook here: https://www.facebook.com/PPP2R5D/

WHEN: February 28, 2018 at 11 AM PST

Since 2015, over 50 families from around the world with children diagnosed with Jordan's Syndrome have connected on Facebook to share stories and support.

To watch the live video, visit https://www.facebook.com/PPP2R5D/.

Events - 02/20/2018

"Spooktacular" Benefit Dinner Raises Thousands for Research

Jordan’s Guardian Angels is extremely grateful to have been the recipient of the 3rd annual St. Catherine’s of Siena Catholic Church Benefit Dinner this past Saturday in Houston.

The Trunk or Treat was a spooktacular time and the turnout was amazing, raising over $7,000!

All proceeds will be directly utilized in our research to find a cure for Jordan's Syndrome. While this is just the beginning, together with your help, we are now closer to achieving our goals and helping children around the world live fulfilling and happy lives.

From the bottom of our hearts, we want to thank @StCatherineHouston for their generosity and support of these families and JGA. A special thank you to our silent auction donors (Finesse Salon & Spa-Memorial, @ElaineTurner, @KendraScott, @karbachbrewing, @OptimalGroup, @TotalWine), Fish Frying Crew, volunteers, family and friends who came out and helped make this wonderful event a huge success!

You have all certainly earned your wings as 3P Angels!

#wearthecrown #totalwine #KendraScott #karbach

Events - 11/07/2017

Golden State Classic Raises Funds for Research

They say in life to expect the unexpected, and such was the case with the inaugural Golden State Classic, an all-star swing for charity event benefitting Jordan's Guardian Angels. This particular surprise arrived in the form of a September Sierra snowstorm, blanketing the golf course at the beautiful Edgewood Resort on Lake Tahoe a little earlier than usual.

A little September snow couldn't dampen the giving spirit, however, as sponsors and donors still enjoyed good company while contributing to a great cause.

Inside the Edgewood clubhouse Friday morning, a group of former professional athletes stole the show, setting up an autograph assembly line. The collection of former NFL and MLB players – who were set to take part in the celebrity golf tournament before the snow arrived – signed dozens of baseballs, a thrill for the sports fans in attendance.

Some of our guests left with more than autographed baseballs. A charity raffle wrapped up Friday's festivities, with fine wine and a free luxury hotel stay among the prizes.

On Thursday night, attendees met for a dinner and watched "The Story of Jordan's Syndrome," a documentary highlighting our research effort and the families pushing for answers for their children. Many said it was an eye-opening film that made clear the purpose and importance of the study that could someday impact millions.

The research effort to find answers for Jordan's Syndrome wouldn't be possible without the generosity of our sponsors and funding partners. We'd like to extend a big thank you to all of those who attended, and made the event a big success – in spite of an early taste of winter! Click here to read more about the event. We also wish to thank one of our presenting sponors, Norwood Associates!