Hadley Hope - Raising Awareness of Niemann- Pick Type C Disease
 

 

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October Update

We received a call from our lawyers’ office back east in CT, but not from our lawyer.  It was another person in her office letting us know that our lawyer, Jennifer Jaff, had passed away only a few days earlier unexpectedly.  This was a complete shock to us, and we were very saddened to hear the news.  Jennifer has spent COUNTLESS hours on our appeal, and arranged calls with Congressmen, and lobbied for us with various agencies in DC.  She worked tirelessly for our kids, and for many others as well, and never charged anything.  We owe her so much, and will never forget her.  Please read this article in the NY Times about her life, and her foundation.  Our heartfelt prayers and condolences go out to her family and many friends.  Thank you Jennifer, and rest in peace.
http://www.nytimes.com/2012/09/24/health/jennifer-jaff-legal-advocate-for-the-ill-dies-at-55.html?_r=0
 
Last Thursday at City Hall, our family and Hadley Hope board members attended the monthly Medford City Council Meeting, and listened as Mayor Gary Wheeler read a proclamation declaring October: Niemann-Pick Disease Awareness Month for the City of Medford.  We sincerely appreciate the mayor and city council in helping us raise awareness for NPC disease.  And to Shannon Jones, who wrote the proclamation, and submitted it to the City!
 
Also, this is one more appeal to please consider coming to our annual Harvest of Hope Dinner on Oct. 27th.  We could definitely use more table sponsors, and more attendees, so please spread the word, and purchase your tickets today!  For Details, and to sponsor a table, or buy tickets, please go online to:  https://www.hadleyhope.com/BuyProducts.asp?eventid=4
 
Blessings,
Bryan & Laura
www.hadleyhope.com




 


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