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.

JORDAN'S SYNDROME: BY THE NUMBERS

More Than
50

Cases

In
19

Countries

Likely Approx.
250,000

Undiagnosed Cases

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1 hour ago

A special thank you to Jabz Boxing-Central Phx for putting together a boxing class benefiting Jordan’s Guardian Angels. These ladies raised $600 and one of our PPP kids also had the opportunity to ... See more

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6 hours ago
Photos from Ppp2r5d -Jordan's Syndrome's post

Congratulations to our Hermione for being the star of the week and getting a certificate from her school! We are proud of every progress this beautiful girl continues to make!

Jane Heseltine Robin ... See more

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1 day ago

Meet our Research Team

Dr. Veerle Janssens (University KU Leuven)

"We are really determined to move on with this research and try to understand what is going on and hopefully find therapies. I ... See more

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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!