Serene Forest

Monday, February 10, 2014

Happy Anniversary to US!!!

Hello All,

 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, 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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