Happy Anniversary to us!!!!!
I celebrated the third year anniversary
of my clinical diagnosis of Andersen-Tawil Syndrome, on February 7, 2011. That
is the date we consider the beginning of the Periodic Paralysis Network. With a
diagnosis in hand, we knew we needed to tell the world about Periodic Paralysis
and share our story. Over time, we wanted to help others get a diagnosis and
share the "Plan" we created of lifestyle changes and and other things
we discovered that saved my life and lessened the severity and amounts of my
episodes of paralysis. We wanted to create a place that others with Periodic
Paralysis, regardless of the type they had and regardless of they whether they
had a diagnosis or not, could join and receive support, friendship, education
and advocacy and to feel that they were not alone. We have definitely grown
since that day...a website, a support and education group with nearly 150
members, a blog, a board specializing in PP and genealogy, several Facebook
pages, a Pinterest site, a book and book discussion board (and two more being
written), a project to create a better set of criteria for diagnosing PP (in
progress), using a four part comprehensive survey, and the recognition as a
medical advocacy group by the national AdvocateDirectory.org, nominated by WEGO
Health for awards in the categories of Health Activist Hero, Best in Show
Facebook, and Best in Show Blog. We are
very proud of what we have accomplished and what we have become and hope
to continue for a long time to come. Thank you all so much for making this a
reality and thank you for your support!!!!!
Calvin and Susan Hunter
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