Incelebration of Rare Disease Day, families from around the world with children diagnosed with a rare genetic mutation potentially linked to autism and Alzheimer's disease, more commonly known as Jordan's Syndrome, connected on Facebook Live to spread their message and stories.
"As a lot of our families have experienced, at the time that we got the first diagnosis, the lab that had done the exome sequencing really said, 'We think you might be the first child in the world,'" said Joe Lang, founder of Jordan's Guardian Angels. "Now, through divine intervention and lots of other things, we are now 54 families strong. As it started to unfold, we started to realize that this is about more than just our children."
The families were joined on Facebook by California State Senator Richard Pan (D-Sacramento), who submitted Senate Resolution 109 today with California State Assemblymember Rob Bonta (D-Oakland) to commemorate Rare Disease Day and highlight Jordan's Syndrome, a mutation in gene PPP2R5D.
"I have submitted a resolution recognizing today as Rare Disease Day, co-authored by a colleague of mine in the State Assembly, Rob Bonta," said Senator Pan. "Our investment in rare disease really has benefits for all of us. Certainly, on one level, it's about recognizing the importance of rare diseases and the families that struggle with them, but it's also recognizing that we all have a stake, together, in children and people with rare diseases, and that the research that is going into this isn't just benefiting those individual families - it's benefiting all of us."
"We need to be sure that families know that there is hope, and that the people of the world are behind you," Senator Pan added.
Teaming up with a pair of superheroes, dozens of families were on the move to raise money for our groundbreaking research into Jordan's Syndrome. The Superheroes on the Move event held last Saturday in the Phoneix area raised more than $4,000!
More than 90 people took part in the walk, which was led by Captain America and Wonder Woman. Three families with children diagnosed with Jordan's Syndrome – Avianna, Ava, and Yara – joined in the festivities.The family-oriented event featured a bounce house, as well as a raffle with donations from the W Scottsdale, Waxing the City Tempe, Kendra Scott Scottsdale, Laser Away Chandler, and a gym membership from Desert Fitness Mesa.
We were also thrilled to be joined by several vendors, including Pawsitive Friendships, a Phoenix-area organization that provides animal-assisted therapy to children with special needs. Thank you to everyone who came together to make this event so special!!
On February 28th, Rare Disease Day, families from around the world with children diagnosed with a rare genetic mutation potentially linked to autism and Alzheimer's disease, more commonly known as Jordan's Syndrome, will connect on Facebook Live to spread their message and stories.
WHO: Families from around the world with children diagnosed with Jordan's Syndrome, including Carole Bakhos, Nancy DeOrta, Joe Lang, Fernando James Plata, and Malinda Burke
WHAT: Rare Disease Day with PPP2R5D Families on Facebook Live
WHERE: Watch live on Facebook here: https://www.facebook.com/PPP2R5D/
WHEN: February 28, 2018 at 11 AM PST
Since 2015, over 50 families from around the world with children diagnosed with Jordan's Syndrome have connected on Facebook to share stories and support.
To watch the live video, visit https://www.facebook.com/PPP2R5D/.
Jordan’s Guardian Angels is extremely grateful to have been the recipient of the 3rd annual St. Catherine’s of Siena Catholic Church Benefit Dinner this past Saturday in Houston.
The Trunk or Treat was a spooktacular time and the turnout was amazing, raising over $7,000!
All proceeds will be directly utilized in our research to find a cure for Jordan's Syndrome. While this is just the beginning, together with your help, we are now closer to achieving our goals and helping children around the world live fulfilling and happy lives.
From the bottom of our hearts, we want to thank @StCatherineHouston for their generosity and support of these families and JGA. A special thank you to our silent auction donors (Finesse Salon & Spa-Memorial, @ElaineTurner, @KendraScott, @karbachbrewing, @OptimalGroup, @TotalWine), Fish Frying Crew, volunteers, family and friends who came out and helped make this wonderful event a huge success!
You have all certainly earned your wings as 3P Angels!
#wearthecrown #totalwine #KendraScott #karbach
They say in life to expect the unexpected, and such was the case with the inaugural Golden State Classic, an all-star swing for charity event benefitting Jordan's Guardian Angels. This particular surprise arrived in the form of a September Sierra snowstorm, blanketing the golf course at the beautiful Edgewood Resort on Lake Tahoe a little earlier than usual.
A little September snow couldn't dampen the giving spirit, however, as sponsors and donors still enjoyed good company while contributing to a great cause.
Inside the Edgewood clubhouse Friday morning, a group of former professional athletes stole the show, setting up an autograph assembly line. The collection of former NFL and MLB players – who were set to take part in the celebrity golf tournament before the snow arrived – signed dozens of baseballs, a thrill for the sports fans in attendance.
Some of our guests left with more than autographed baseballs. A charity raffle wrapped up Friday's festivities, with fine wine and a free luxury hotel stay among the prizes.
On Thursday night, attendees met for a dinner and watched "The Story of Jordan's Syndrome," a documentary highlighting our research effort and the families pushing for answers for their children. Many said it was an eye-opening film that made clear the purpose and importance of the study that could someday impact millions.
The research effort to find answers for Jordan's Syndrome wouldn't be possible without the generosity of our sponsors and funding partners. We'd like to extend a big thank you to all of those who attended, and made the event a big success – in spite of an early taste of winter! Click here to read more about the event. We also wish to thank one of our presenting sponors, Norwood Associates!
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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.