ELMWOOD PARK, N.J. – An Elmwood Park family is taking an unconventional route to raise awareness about their daughter’s rare disease.
They are encouraging people to drink pickle juice – and record themselves doing it.
“We wanted to do something silly that didn’t cost any money. And it is kind of spreading,” said Denise Ingui, whose teenage daughter Dee Dee has Peutz-Jeghers Syndrome, or PJS. It is estimated that just one in every 300,000 people have the rare genetic disease.
After Dee Dee was diagnosed, Denise and her husband Sal formed Rare is Beautiful, a non-profit with a mission to spread awareness about PJS, financially assist families, and ultimately, help find a cure.
And their current campaign – dubbed the PJS Challenge – is focused on raising awareness.
Here is how it works: People in their pajamas, or pj’s, record themselves either taking a pickle juice shot, or doing three sets of pushups, jumping jacks and squats. Then they share the video on Facebook using the hashtags #RAREISBEAUTIFUL and #PJSCHALLENGE and nominate two more people to take the challenge. And those people have 24 hours to do the challenge themselves, or donate to Rare is Beautiful.
Denise said she really likes pickles, so her shot of pickle juice “was no big deal.”
But some people who have taken the challenge haven’t had it so easy.
“The faces they are making and everything are so funny. It has been funny to watch the videos,” she said.
For more information on the PJS Challenge, and to watch videos of people taking it, CLICK HERE.