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Follow The Call of the Disco Ball – Houston Fundraiser a HUGE Success

Candice and Tim Huber have done it again, raising over $530,000 for Jordan’s Syndrome Research.

December 2, 2023 was an incredible night at the White Oak Music Hall in Houston. The event was complete with a silent and live auction, a design your own cowboy hat bar, food, drinks and it all finished under the disco ball where hundreds of people turned out to hear The Broken Spokes and country music star Clay Walker perform! It was a night to remember! 

From the Hubers and all of us at JGA we want to give huge THANK YOU to: 
 
-The Stier Family
-The Young Family
-Larry & Sally Fogg aka Mawmaw and Paw to Hutton & Leighton
-Bobby & Heather Anderson 
-Fabian Torres 
-Jeremy & Katie Morgan 
-Hamby Family
-Dave Wolf for arranging the beautiful Balenziaga & Gucci Purses in the auctions
-David Adkins & Jennifer Lucio w/ Martha Turner Sotheby’s 
-Kaustubh Daige & Larry Fogg w/ The Generator House
-Kevin Scroggins & the Santas Elves Foundation 
-Kim Hardy & Amy Webber for the beautiful flower arrangements
-Magness Orthodontics
-Matt & Josh Carr w/ California Marine Cleaning 
-Mona w/ Lashes Plus
-Juliette Breeze w/ Next Level Urgent Care
-Nadia Banegas w/ Pug Balloons        
-Shannon Strickler at Del Monte Reality 
-Trent Henry at TMS Roofing 
-Jesse Brown w/ Optimal Fundraising
-John Collado and the entire USI crew 
-Greg Janese at United Talent Agency 
-Katie & Mark White Oak Music Hall 
-Mari Dashawn & Kristina Rossenwasser w/ Da Rose Hat Bar (IG:@de.rose.shoppe.hatbar)
-Rylie Falwell for her amazing live painting (IG:@ryliecaldwellart)
-Vanicka Terhune for her amazing live painting (IG:@vanickaj)
-The Broken Spokes for another fantastic performance (brokenspokesmusic.com)
-AND thank you to all of our JGA Families who attended 

Scroll down to see all of the pictures from the event! 
 
Fundraising is a vital part of Jordan’s Guardian Angels, especially this year as we get set to begin human clinical trials. We hope that ALL of our JGA families will fundraise in some way this year. Big or small, every dollar counts! If you would like help with your fundraiser, email Candice Huber, Family Engagement Coordinator at chuber@jordansguardianangels.org
 
Thank you Team Huber for all that you do! We LOVE you!

Check out all of the event photos!

Published

January 31, 2024

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Inspiring Support: JGA Fundraising Event a Huge Success (PHOTOS)

We want to take a moment and celebrate the Huber Family for once again doing an incredible job of raising money for Jordan’s Syndrome research. More than $100K was raised at their Sip, Savor and Support JGA event in November.

And that’s not all: SO MANY OF YOU helped to make this event a success by selling tickets raising $30K!

THANK YOU THANK YOU THANK YOU TO EVERYONE INVOLVED!

Scroll down to see pictures from this fabulous event.

There are so many ways to fundraise for Jordan’s Guardian Angels and our research efforts into Jordan’s Syndrome and our mission. Stay tuned for more new and exciting opportunities.

Published

January 19, 2023

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"Let's Blow Out Jordan's Syndrome": Event Raises Thousands for Research

It was a night to remember in Arizona last month, as Nancy De Orta and family put on an incredible fundraiser benefitting Jordan’s Guardian Angels! Together with their guests, more than $15,000 was raised and will go directly toward Jordan’s Syndrome research!

Guests enjoyed blow outs, great music, incredible décor and much much more and to top it all off, guests were outbidding each other just so that they could gift Avianna with the prize she was hoping for… check out what she took home below!

Nancy thanked all of the generous donors on social media saying, “We are beyond blown away by the love and support that you all have shown us not just at this event but throughout our journey. Thank you for helping us fight to find a cure/treatment! Thank you for being our angels.”

A big thank you for to the following sponsors for their generosity:
-Limitless Charcuterie
-Tony Camacho Photography
-Anthony Jensen (AKA DJ YKNOT)
-ICStrategy
-Tara at Scout & Cellar
-Bespoke Salon

From all of us at Jordan’s Guardian Angels, THANK YOU THANK YOU THANK YOU! We couldn’t do what we do without all of you!

Published

June 2, 2022

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Racing for a Treatment or a Cure for Jordan’s Syndrome: Our Most Successful Fundraiser to Date!

It was a star-studded October evening in Houston, where families from around the world came together in a record-setting fundraiser to support our groundbreaking research.

Candice and Tim Huber, whose son six-year-old son Hutton has Jordan's Syndrome, hosted their annual fundraiser benefitting Jordan’s Guardian Angels. As in years past, the generosity of those attending was nothing short of incredible. This year’s event raised over $440,000 for a treatment or a cure for Jordan’s Syndrome, our most successful fundraiser to date!This year, those in attendance wore their Kentucky Derby finest and were treated to an incredible motivational speaker, a live and silent auction, great food, dancing and more.We cannot say thank you enough to Candice and Tim Huber whose tireless efforts are simply unmatched. Your generosity, enthusiasm and love for our children and our cause know no bounds. THANK YOU from the bottom of our hearts!

We also would like to recognize our partners who went above and beyond to make the event a huge success for our children.

Table Sponsors:
Larry and Sally Fogg
USI
Fire Safe
The Anderson Family
The Breeze Family
The Caldwell Family
The Fineberg Family
The Gill Family
The Hardy Family
The Hess Family
The Noreaga Family
The Purdy Family
The Torres Family
The Sims Family
The Young Family

Live Auction Donors:
EXTREME DUCK HUNTING – Larry & Sally Fogg
GEAUX SAINTS GEAUX – Jeremy and Katie Morgan along with Southwest Airlines
SEA GLASS – Painted By Rylie Caldwell, www.ryliecaldwell.com; IG: @ryliecaldwellart
NEW BEGINNINGS – Painted By Amy Fogg Reedy, www.amyfoggart.com; FB: Amy Fogg Art; IG: @amyfoggart
WINGED SOUL – Painted By Leslie Tammariello, leslietammariello.com; FB: leslie.tammariello

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

December 1, 2021

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Momentum Building: 2019 Year-in-Review

In 2019, the Jordan’s Guardian Angels global community of families and researchers pushed ahead, making significant strides on our journey to cure Jordan's Syndrome, a mutuation on the gene PPP2R5D.

Our brilliant researchers are working together collaboratively in a way the science world has never seen, helping establish a roadmap for treating not only Jordan's Syndrome, but other rare genetic conditions. Our families around the world are united, dedicated to finding answers for our children. And none of this would be possible without the incredible support we receive from communities across the world.

Our Families

  • Our community grew from 78 families to 120 families this year!
  • We had our second family conference in March in the San Francisco area, where families from all over the world joined together with the entire research team to learn about the latest breakthroughs.
  • Click here for an in-depth look at the potential worldwide impacts, and watch the video below to experience the family conference!

Our Research

  • We held two in-person workshops in Chicago and New York, and bi-monthly virtual labs with the entire research team as they continue their amazing work.
  • Our wonderful research team made significant progress in their efforts to find a treatment and a cure for our children over the last year. In the words of lead medical investigator Dr. Wendy Chung, our toolbox is full.
  • We now have iPSCs derived from our children, mice models for , and nanobodies for each variation.
  • At our recent research team meeting in New York City, we learned the team has made great progress in understanding how the mutation works, which will help focus their search for a cure.
  • Our researchers believe the PPP2R5D mutation may be connected to some of our greatest medical mysteries, including autism, Alzheimer's, and cancer – and potentially much, much more.

Getting the Word Out

  • Our website traffic is increasing at a substantial rate and our videos have been shared and seen by tens of thousands of people all over the world.
  • The San Francisco Giants and Minnesota Twins welcomed JGA to their ballparks, showing us on the big screen with our message visible for more than 50,000 people to see.
  • The San Francisco 49ers also mentioned JGA on their social media accounts, where millions of people were able to gain more awareness about our efforts.

Our Community

  • Many fundraising events have been held around the globe.
  • The North Dakota Gala and the Golf Tournament raised more than $215,000.
  • Our annual Lake Tahoe fundraiser also raised an additional $200,000.
  • In addition, we are SO proud of our families who have also stepped up and raised over $52,000 through in-person and Facebook events. So much to be thankful for!

We have much work to do, but we are well on our way to making our children's – and the world's – future as bright as possible. We owe it to ALL of our children. Here's to another amazing year in 2020!

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

www.facebook.com/PPP2R5D

www.twitter.com/PPP2R5D

Published

January 11, 2020

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Image Gallery: 2019 Angels Tournament

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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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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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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.