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Sep
09

Raising awareness for Sanfilippo Syndrome IIIC and IIID – could Microsoft help us find our patients?

1 slide flyer for SF v4Previously I had written about the need to find patients for Sanfilippo Syndrome IIIC and IIID to join a registry and take part in a Natural History Study. In fact I keep writing about it in as many places as I can. In addition we are actively working with academics to develop treatments so it would be very useful to find as many patients as we can.I am sure thousands of other rare diseases are in the same boat.

In between recent grant writing spells, I took a little diversion to create a graphic to try to visually present this. This is now on slideshare so anyone can take it and use in their own presentations. It is also on the website for Phoenix Nest alongside lots more info on Sanfilippo syndrome. I am pretty sure there are other places we will put the graphic up on. The families are gratefully acknowledged for providing the photo as well as all the foundations globally and friends who live with the disease 24/7.

In addition we are try to raise awareness in new places – but here is a new one…MICROSOFT of all places- Jonah’s Just Begun is trying to win $50k from an online Twitter challenge which would be enough to fund a postdoc to do more work on the disease.

Cut and paste this line into a tweet!
@JJB4CURE we help save children suffering from Sanfilippo ‪#‎upgradeyourWORLDusa‬ ‪#‎vote‬ #MPSIII


-Do it everyday on all your social media platforms until September 23rd.
Of course it does get you thinking, billions of people on the planet use Microsoft products everyday, what if rare disease foundations could leverage their reach to find patients..or just raise awareness of rare diseases in general. One it would be very nice of them 🙂 and two one would have to think how to actually do it other than sending everyone connected to the internet a little message, in stead of the usual software update. Lets put it this way my daily reminder to upgrade to windows 10 is ever present.
If there are any new patients / families who are reading this please get in touch. Either by sharing a mnessage or dropping a message to Jonah’s Just Begun or Phoenix Nest.
I would love to hear any novel ideas of how to find patients for rare diseases, what works and what does not?
Now back to the research!

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