Events Archives – Jordan's Guardian Angels

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.

"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!

Events / Our Global Community - 06/02/2022

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!

Events / Our Global Community - 12/01/2021

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

Events / Our Global Community / Research Update - 01/11/2020

Pro Athletes, Musicians Help Raise Awareness, Funds for JGA Research

Watch: At a star-studded event raising money for worthy children's charities, pro athletes and musicians spoke about why they're helping get the word out about Jordan's Guardian Angels.

Events - 10/09/2019

Image Gallery: 2019 Angels Tournament

Events - 05/21/2019

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!

Events - 05/08/2019

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!

Events / Uncategorized - 03/15/2019

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

Conferences / Events / Research - 01/11/2019

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!!!

Events - 08/29/2018

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

Published

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

Published

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

Published

Momentum Building: 2019 Year-in-Review

Our Families

Our Research

Getting the Word Out

Our Community

Published

Pro Athletes, Musicians Help Raise Awareness, Funds for JGA Research

Published

Image Gallery: 2019 Angels Tournament

Community Comes Together to Raise Tens of Thousands for Research

Published

Hundreds Come Together in Fargo, Raise Money for Research

Published

Closer to a Cure: 2018 Year-in-Review

Our Research

Our Families

Our Community

Published

Swing for Charity Event Raises Hundreds of Thousands

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