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Our Global Community: Marley Mae 5K Raises Thousands

From Washington State, across the country and around the world, families joined our race for a cure for Jordan’s Syndrome.

The Marley Mae 5K and Family Walk, a virtual walk and fundraiser organized by a Washington family whose daughter is diagnosed with Jordan’s Syndrome, raised thousands of dollars to help fund our groundbreaking research effort. Dozens of participants took part in the virtual race, a race that can be run or walked from any location around the world.

Luke and Sandy Larsson created the event in support of their daughter, Marley, and other children impacted by Jordan’s Syndrome worldwide. Jordan’s Syndrome is a rare genetic mutation on the gene PPP2R5D that causes developmental delays and other symptoms, and is linked to autism, Alzheimer’s and cancer. There are now 100 cases worldwide. Jordan’s Guardian Angels is leading the research for a cure.

Last October, the Larssons wrote on the event’s Facebook page:

“This past winter, after 6 years of not having a diagnosis for our little girl, we finally got one from Seattle Children’s. Marley’s genetic team informed us that they figured out what was going on and explained all the research about an abnormality in her PPP2R5D gene. We also learned that Marley was the 65th person in the world to be diagnosed with it. After being in the dark for 6 long years and thinking Marley was the only one with this mystery problem, we were immediately in contact with other families from around the world. It was amazing!”

The Larssons created a website, t-shirts and more to help spread the word about our amazing journey – and in mid-May, people all over the world took part. It is yet another inspiring show of support and generosity – in a journey we couldn’t make without all of you.

After the two-day event, the Larssons wrote, “Thank you so much for helping make the first Marley Mae 5K and Family walk a huge success,” the Larsson family wrote on the event’s Facebook page. "We can’t thank you enough for all the support. We couldn’t have done it without you.”

The event raised $3990! Congratulations to our Marley Mae 5K winners:

First Place: Steven Hall (21:25)

Second Place: Erin Mcconnell (25:08)

Third Place: Jennifer McConnell (25:48)

Silliest Group Photo: The Hadley Family

Best Photo: Ann Marie Keeler

Published

May 31, 2019

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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!

Check out our full image gallery below!

Published

May 8, 2019

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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.