Our Families

FIGHTING FOR A CURE

There is no love like the love a parent has for their child.

From New Zealand, to Israel, Colombia and everywhere in between, parents of children impacted by Jordan's Syndrome worldwide are guided by that fierce, limitless love. Our families are from across the globe. If not for the PPP2R5D variation, we all almost certainly would have remained strangers.

Instead, we are united by this common cause, coming together to do whatever necessary to push this research forward. Bolstered and strengthened by the bond we collectively share, we are committed to doing whatever it takes to bring a brighter future for our children – and so, so many more.

IN THEIR OWN WORDS

The families impacted by Jordan's Syndrome
share their stories, and their collective hope for a cure.

JORDAN'S SYNDROME: BY THE NUMBERS

More Than
60

Cases

In
19

Countries

Likely Approx.
250,000

Undiagnosed Cases

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1 month ago
Photos from Ppp2r5d -Jordan's Syndrome's post

Sleep apnea can occur when the upper airway becomes blocked repeatedly during sleep, reducing or completely stopping airflow. Risks if not treated properly can impact intelligence, behavior, growth ... See more

1 month ago
Photos from Ppp2r5d -Jordan's Syndrome's post

Jordan's Syndrome's rocks are starting to get discovered! You can join us in this simple way to help spread awareness!

What does rock painting have to do with raising awareness?

Here is how it ... See more

1 month ago

Fun Fact!

Did you know that average age within our 61 families is 7? We are only connected with 5 young adults (over 18) within the group. The gene PPP2R5D was not discovered until late 2015; ... See more

FACEBOOK: OUR GLOBAL COMMUNITY

On the PPP2R5D Facebook page, families worldwide impacted by Jordan's Syndrome find hope. Our public Facebook page is open for anyone to join.

There, you will not only learn about the research, you will get a glimpse into the realities of living with Jordan's Syndrome from those experiencing it first-hand. You may also find inspiration in the children, whose spirit and courage in the face of daily challenges is unwavering.

Scroll through our most recent Facebook posts!