Saturday, November 30, 2013

And the Award Goes To...

For our final day of blogging during National Health Blog Post Month, WEGO Health asked me to nominate a health activist for one of their Health Activist awards.  Since they allow organizations to be nominated, I went ahead and nominated the International WAGR Syndrome Association (IWSA).  The IWSA is an all-volunteer organization; meaning no one, not even me as the president receives any payment or advantages from the group; and still we work hard each day, month, and year, to ensure that we uphold our mission:

“The mission of the IWSA is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives”
I cannot express sufficiently how honored I am to be among this group.  I am moved to tears during each WAGR Weekend when we hear about what the IWSA has accomplished from one year to the next. To think that this group of moms (to begin with) actually got together, said, "There must be more of us out there," and then forged ahead through the mysterious "new" internet to make contact with the other families.  These passionate women, moved to connect by their child's rare disease, started newsletters, built websites, constructed medquest surveys, and got the attention of the medical world all before my daughter was even born.  That is amazing; especially considering that THEY had kiddos with WAGR as well!!!
I volunteer at my church because I am grateful for what Christ did for me in freeing me from the bondage of slavery.  I volunteer for the IWSA because I am grateful for those people who took time; to learn, to act, to build so that we could have a strong organization that strives to make life wonderful for each person with WAGR/11p Deletion Syndrome.  
If someone would like to learn more about the IWSA; it's history, it's future, it's accomplishments, she or he can watch a youtube video created in 2010 by one of the IWSA leaders. 
The video is just over 13 minutes long, but if an abbreviated version is necessary and one would like to find out how "One Person" can make a difference, jumping ahead to minute 9 or so can get you there.  
We continue to add more and more families to the IWSA, and they are scattered around the globe.  The response when a family connects with us is priceless and is almost always the same, "For the first time, I feel hope."  "For the first time, I belong."  "For the first time, I don't have to explain a thing."  Truly, that's better than any pay check in the world.  
Thank you to all of my followers during National Health Blog Post Month; I hope you'll stick with me as I try my skills at blogging independently!  Tomorrow, considering this jump into a new opportunity, I'll be writing about what would happen if I fail?  

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