"Suffering the Slings and Arrows of Outrageous Fortune"

You may have already seen this around, but I thought it was definitely worth sharing here. (This is copied with a few tweaks from information shared by CCHMC on the EDNF message board):


Our next event, Aug. 20 @ 7pm EST, is a free, online, live event to help parents and families understand the options for pain management associated with Ehlers-Danlos Syndrome (EDS).

This event will feature two of our physician experts who specialize in pain management for EDS to answer patient and family questions. They will talk about common pain management techniques, the importance of proper medication (as well as not over medicating), and answer specific questions from families living with pain associated with EDS.

You can take a look at a similar chat we did here:

The online event will be a personal chat with two knowledgeable and experienced doctors (Dr. Neilson, geneticist who took Dr. Tinkle’s place, and Dr. Goldschneider, pain management doctor at Cincinnati Children’s Hospital Medical Center) during which your community will have the chance to ask their questions directly to the doctors and have them answered live through a video feed! 

We would love for as many people as possible to benefit from this opportunity to speak with experts in pain management for EDS.

Check out this link for more information and to RSVP!


There are a few easy ways to get involved:

1) Share the RSVP link with your community through email, Twitter or Facebook.

2) Participate in the event and share with familieswho can really benefit from the information our physician experts can provide.

3) Provide Feedback. Let us know what types of events your community is looking for so we can continue to provide unique content to those in need.

Hope you can ‘make it’ to this event  – I am hoping to. If I can, I will post about it afterwards.

FYI, Dr. Neilson is Em’s geneticist and we really like him – this would be a good opportunity for anyone wondering what he is like to get an idea of how he rolls. Dr. Goldschneider was also Em’s pain management doctor for a while but we eventually decided  to ‘go in a different direction’ for her pain management.


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