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Community Comes Together to Raise Tens of Thousands for Research

In the Lonestar State, dozens hit the links to support our global, groundbreaking research. The Angels Tournament held in Houston, Texas, raised over $100,000 to help fund our continued efforts to find a treatment and cure for Jordan’s Syndrome, a rare genetic mutation on the gene PPP2R5D linked to autism, Alzheimer’s, and cancer.

The event was organized by the Huber family, whose three-year-old son Hutton was diagnosed with Jordan’s Syndrome. Last year, the C3P-Go Gala organized by the Hubers raised an impressive $365,000 for Jordan’s Syndrome research. This year, our community came through once again – opening their hearts for a cause that may someday change the lives of millions around the globe.

Despite windy conditions, several teams posted low scores. The coveted Baby Blue Blazers went to Bobby Anderson, Jon Bellamy, Jack Hardy and Shawn Stoute. Congratulations, gentlemen!

We’d like to take a moment to acknowledge everyone who worked behind the scenes to make sure this event was an incredible success.

First and foremost, none of our 20 teams went hungry or thirsty, thanks to all of our hard-working chefs and volunteers:

• Michael Cunningham & Kaustubh Dighe (Merton Riser)
• Barney Gary & Jay Harvey
• Andrew Heckman (Holloman)
• Vidal Jackson (Bundt Cake Aholic)
• Misty Miears (Snolie’s Snoballs)
• Duke Talbot (Hadco / Linx Meat Market)
• Gary Walding
• Whataburger

A huge thanks to all of our Angel Sponsors:

• The Fogg Family
• The Gary Family
• Santa’s Elves
• USI
• CRC Group
• The Brumley Family
• Altivia
• Hadco Services
• Goldman Sachs
• Holloman
• Fast Track Specialties
• Lee & Associates
• Synapse Services LLC
• The Martin Family
• Whataburger

We greatly appreciate our Raffle Donors:

• Jordan’s Guardian Angels
• The Young & Driver Family
• The Breeze Family
• The Spears Family
• Riverway Title, Hunter Wright
• The Huber Family
• Royal Oaks
• The Fogg Family
• Nice Winery
• River Bend Country Club
• Kendra Scott
• Whataburger
• Igloo

It goes without saying, but from the bottom of our hearts, we at Jordan’s Guardian Angels are incredibly thankful for the generosity and support. You truly are life-changers!

Published

May 8, 2019

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Hundreds Come Together in Fargo, Raise Money for Research

On a frigid night in Fargo, North Dakota, the giving spirit warmed the hearts of Jordan’s Guardian Angels families across the world. More than $125 thousand was raised for our research at the Diamonds and Denim Gala.

The charity event was hosted by Jessica and Jeff Laliberte, and Savannah and Sydney Glover. Sydney is one of more than 80 children to be diagnosed with Jordan’s Syndrome, a rare genetic mutation on the gene PPP2R5D linked to Autism, Alzheimer’s, and cancer. Jordan’s Syndrome causes significant developmental delays, global hypotonia, and in some cases seizures and autism symptoms.

Multiple families from the Jordan’s Guardian Angels community were in attendance from all over the U.S., including Jon and Stacy Kelley, who gave a heartwarming speech about their quest to find a cure for their daughter Vivian.

Dr. Brian Wadzinski from Vanderbilt University, a member of our international research team of geneticists, medical investigators and scientists, updated attendees about the amazing potential for our research – and the encouraging progress that’s already been made in the first year of the study.

The crowd was entertained by Christian Guardino, a former America’s Got Talent semi-finalist. Christian performed several times and also shared his inspiring story of how experimental gene therapy cured his blindness.

A special thank you goes out to Jessica, Jeff, Savannah, and Sydney – and to everyone who made the Diamonds and Denim Gala such a special evening. The impact will be felt around the world!

Published

March 15, 2019

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Closer to a Cure: 2018 Year-in-Review

In 2018, the Jordan’s Guardian Angels global community came together to push us closer than ever to a cure for Jordan’s Syndrome.

From research breakthroughs, to securing a multi-million dollar grant from the State of California, our progress continues at lightning speed. It wouldn’t be possible without our brilliant researchers, our incredibly generous supporters, and most of all, our families whose dedication is driving us forward.

Our Research

  • Researchers have confirmed what they long believed: Jordan’s Syndrome, a mutation on the gene PPP2R5D that causes developmental delays and low muscle tone, is reversible.
  • Initial research revealed Jordan’s Syndrome is linked to autism, Alzheimer’s, intellectual disabilities and cancer. It’s now thought the genetic mutation may be connected to even more of the most pressing medical mysteries the world faces today.
  • In 2018, nearly $500,000 was spent in support of the research.
  • A $12 million grant was allocated by the State of California to support groundbreaking research into Jordan’s Syndrome.
  • Medical investigators and geneticists are studying skin cells bravely given by our children to better understand how Jordan’s Syndrome functions. Our team will explore the use of cutting-edge tools like Crispr for treatment.
  • Stem cell lines and neurons are being created, as tools for therapeutics.
  • Click here for an in-depth look at the potential worldwide impacts.

Our Families

  • Our global community nearly doubled in size. We are now connected to 77 families across the world.
  • The 2019 family conference is scheduled for next March outside San Francisco, California. We are excited to have dozens of families attending from all over the world to meet face-to-face with our entire research team.

Our Community

  • Thanks to the generous support of our global family, Jordan’s Guardian Angels raised more than $500,000 at multiple fundraising events. We can’t begin to express our gratitude!
  • While the State of California grant will support initial research efforts, much work remains. Your continued support is more critical than ever.

Cheers to another great year in 2019! Together we will continue to climb over any hill or mountain that come our way as nothing will stop us from getting to our goal! We owe it to ALL of our children!

Follow our journey and connect with our community on social media!

www.facebook.com/PPP2R5D

www.twitter.com/PPP2R5D

Published

January 11, 2019

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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!!!

Published

August 29, 2018

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VIDEO: Medical Investigators, JGA Team Reveal Research Progress

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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.

“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 TexasNice 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

Published

April 17, 2018

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Image Gallery: 2018 C3P-Go Gala

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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.

Published

March 5, 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!!

Published

February 28, 2018

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1121 L St, Suite 100, Sacramento, CA 95814

Jordan’s Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above.