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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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Francis 2

Our Global Community: Students Go Above & Beyond

In today’s edition of “Our Global Community,” we’re celebrating the incredible, life-changing bond between 9-year-old Francis Grant, one of the 60-plus children in the world diagnosed with Jordan’s Syndrome, and his fellow classmates.

Francis has attended Letterkenny Educate Together in Donegal, Ireland, for three years. The elementary school fosters an open, inclusive atmosphere for students to learn and grow together. But it wasn’t an easy choice to send him to school.

“Taking Francis into school was one of the hardest decisions to make for me,” said Francis’ mom Gina in a post to the school’s Facebook page. “I had him at home with 24/7. The thought of him being with strangers – and because he has no communication – I was heartbroken thinking he wouldn’t be able to tell me he was scared or lonely.”

What happened next is a testament to the power of inclusiveness. Francis’ classmates didn’t turn away. They welcomed him with open arms into the school’s community. Their unwavering support has helped Francis grow in leaps and bounds.

"He has changed so much in his 3 years there,” Gina said. “He is accepting social situations with ease now. This would never have happened before. He is far more aware and for the first time this past two months, giving hugs. He enjoys being with the other students so much, who play with him and read to him daily. He tries to feed himself and do what they do. It’s great to watch. He is looking at books and interacting with people and toys, which he never did before starting school."

Recently, Francis’ classmates won a contest, and instead of keeping the prize money, they gave it to his teacher to pay for extra resources for him. They also made Francis a sensory mat, a key developmental tool.

“These students and this school has helped us all see the boy behind the silence,” Gina said. “I’ll always be grateful they accepted him and his family with open arms, and they have shown to us that inclusion can – and does – work.”

Published

July 3, 2018

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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.