5+ years ago Facebook was a new concept to me. Shortly after creating my own personal account I became involved with the Dempster Family Foundation (DFF) and the 22q community. At a tiny 22q meeting in Gainesville, FL I remember checking my Facebook updates and thinking to myself how useful regional or state based 22q groups might be. I thought to myself that we should create a 22q support group on Facebook for each of the 50 states. I thought it would help families to know they were not alone. I thought they might share their experiences and network to find common themes or solutions. I thought right! Today their are well over 150 pages and groups dedicated to 22q. Some created by organizations and many more created by families. Theses pages and groups are chocked full of experience... Experience with a diagnosis that once for most of us, was a complete mystery, the first time we ever heard it. So, I too would like to thank Mark Zuckerberg for creating a place where families affected by rare disorders can find common ground and support, when it if often unattainable anywhere else. -Michelle Breedlove Sells Executive Director Dempster Family Foundation m.huffpost/us/entry/6516642
Posted on: Tue, 27 Jan 2015 16:09:49 +0000
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