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Rare Disease Day: Children Around the World With Rare Genetic Mutation Share their Journeys on Facebook Live

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.

Click here to watch Senator Pan's livestream of the Rare Disease Day event.

Click here to watch PPP2R5D's livestream of the Rare Disease Day event, hosted by Carole Bakhos of Denver, CO.

Published

March 5, 2018

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Jordan’s Guardian Angels to Host Global Facebook Live Event on Rare Disease Day

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/.

Published

February 20, 2018

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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.