NCHD Reactions

Colleen Cagney-Osbourn attended the National Conference on Histiocytic Disorders and shared her experiences:

Last night we had the reception and were able to meet a lot of the families I have followed on caringbridge.com It was neat to have someone sit down with you and recognize their children before them. I have met two more families with jaw LCH and our stories are almost identical. Jeff Toughill says their are about 200 families here.

To sit in a room full of people who really understand is a gift....

Heather Wolf provided this update:

We are learning a ton about histio & meeting wonderful families at the National Histiocytosis Conference here in Wisconsin. Can you believe that we are the only family here with Rosai Dorfman Histio! That is how rare Sawyer's disease is, even in the histio world! Honestly, a little lonely feeling ;)

Being in a room with other understanding families is a sheer gift!

Sue Nazarchuk just checked in with additional thoughts:

Convention just ended. Wow. My mind is mush! I think its time for a drink! What an awesome weekend! Incredible speakers and wonderful friends!

Colleen Cagney-Osbourn:

... so glad to have met some families who have the same struggle. I am not alone!