Screen Shot 2019-11-21 at 9.44.47 PM

VIDEO: JGA Researchers Nearing Breakthrough

In beautiful Lake Tahoe, California, the Jordan's Guardian Angels team came together to hear about the latest breakthroughs in our mission to cure Jordan's Syndrome, a mutation on the gene PPP2R5D.

Watch the video below to learn about the incredible advancements our research team is making, a journey we couldn't make without the incredible generosity of our international community.

To connect with our global community, visit https://www.facebook.com/PPP2R5D/.

Published

November 22, 2019

Share

60597126_438176710062059_5331455436962922496_o

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

Share

IMG_3472

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

Share

IMG_3812-min

Families, Researchers from Around the Globe Discuss Groundbreaking Research

From Australia to the UK, Columbia to New Zealand and everywhere in between, families from all over the globe united outside San Francisco to fight for a cure to Jordan’s Syndrome, a rare genetic mutation linked to Autism, Alzheimer’s and even cancer.

44 families came together at the second annual Jordan’s Guardian Angels Family Conference in Burlingame, joining the Jordan’s Guardian Angels research team to learn about the latest breakthrough discoveries in our quest for a cure.

Jordan’s Syndrome, a mutation on the gene PPP2R5D, causes developmental delays, global hypotonia, and in some cases, seizures and autism symptoms.

"Jordan's Guardian Angels brought us all together... these strangers from around the world. We laughed, cried, danced, shared experiences, and built lifelong relationships,” said Carole Bakhos, project manager, whose daughter Yara has been diagnosed with Jordan’s Syndrome.

Researchers from nine universities across the U.S. and the world are joining in an unprecedented partnership to work collaboratively toward finding treatments to reverse or cure Jordan’s Syndrome. They provided promising updates on their progress, met individually with families, and collected blood samples given bravely by our children to be used for further study.

“Our research is always designed to move from bench to the bedside, from the laboratory to the patient. Having so many Jordan’s Syndrome families come together in one place makes the work we do so much more real and significant. We see the very people we’re trying to help, and it truly makes a difference,” said Jan Nolta, director of the UC Davis Stem Cell Program and the university’s Institute for Regenerative Cures in Sacramento. UC Davis is one of the institutions partnering on the research.

More than 80 people across the world have been diagnosed with Jordan’s Syndrome, though it’s believed there could be hundreds of thousands of undiagnosed cases.

The Jordan’s Guardian Angels global community was well-represented in Burlingame, with attendees from: Argentina, Australia, Austria, Canada, Colombia, Denmark, India, Ireland, Israel, New Zealand, Norway, Sweden, the Netherlands, the United Kingdom and multiple states across the United States.

“We now know, without a doubt, that we will never feel alone on this journey again,” Bakhos said. “We will continue to march hand in hand, motivated by our children. Our hard work and determination will make a difference in this world; it just has to!"

A huge thank you to all of our families, many of whom traveled thousands of miles to be in Burlingame. Without you, this journey would not be possible. Thank you to our international dream team of researchers, whose brilliance and dedication is driving this research forward to find answers that may help unlock answers for not only our children, but potentially millions more. Finally, we would be remiss without thanking Tree House Tribes, whose volunteers led multiple children's workshops throughout the conference.

Published

April 4, 2019

Share

IMG_7272

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

Share

large_18b4214d9_1357

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

Share

Connect With Us

Contact Info

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.