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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4 weeks ago

Very happy to be witnessing Fiona's first steps! She's been working very hard and it has paid off!

While most babies take their first steps between 9 and 12 months, it's not until around 4 years ... See more

4 weeks ago

Congratulations to Jessica on her graduation from Camphill Special School. This is only the beginning!

Randee Bernstein Halvorsen

#ppp2r5d #jordanssyndrome #jordansguardianangels ... See more

1 month ago

“No matter how much icing is on your birthday cake, it can’t be sweeter than you!”
HAPPY 2nd BIRTHDAY SIEM!!!!🎉🎉
Desiree Meijer-te Hennepe

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!