What a coincidence!

What a Coincidence!

15-11-13

Everyone in the PWS world knows by now that the syndrome is caused by an alteration that occurs on the chromosome 15 .  Many will know that the location of this alteration is in the region labelled by the genetic location described by geneticists as 15q11-q13, And guess what!  15-11-13 is also the designation for the 15^th of November 2013 in most parts of the word!  A great coincidence that only occurs every 100 years, and one that can be used to promote further awareness of PWS.

Many of you will also know that another disorder, Angelman syndrome, has the same genetic alteration (but on the chromosome contributed by the mother) and for them this is also known as 15-11-13. Its symptoms are different from PWS. 

And to stretch the coincidence even further, there is yet another genetic syndrome called Duplication 15q11-q13 which is due to a duplication of the same genetic region that is deleted or supressed in PWS and Angelman syndrome.

IPWSO and the U.S. Associations for these two other syndromes related to 15q11-q13 have gotten together and sent a request to Google to see whether their Doodler team (the people who design Google’s homepage) would come up with a doodle just for us to share with the rest of the world.  (You can see our submission on our website, here.)

This is a unique opportunity to introduce the rest of the world to this special date with the same designation as three rare genetic disorders, and for this reason we want to celebrate! 

We want you to join us and send in photos of your loved ones so that we can put them on our website promotion page

• We want to hear your success stories – just a short paragraph will do!
•  We would like to suggest that you notify your members about this special date and promote it on your website or newsletter, if you have them
• Get creative! For example, a support organization in Spain, FSPW, has made some T-shirts to wear when they celebrate on that special date, which you can see on their website.

What do you say?  Will you join us?  Watch Facebook for new developments; send in your stories and photos directly to me, IPWSO Communications Coordinator, so we can share this amazing day!