Philly Cure HD      
Notes & News 
for our local 
HD Community

PHILLY CURE HD                                                           August, 2016

In This Issue






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 PO Box 4054_ Philadelphia_ PA 19118
Upcoming EventsUpcoming
Caregivers Gathering
August 2nd, 6:30 to 8:30 PM.  Our HD Caregivers meet every other month. Please RSVP. 

A Summer Pop Up Walk in the Park 
The date is to be announced.  Some sunny weekday in early August, Joanne will send out a last minute notice inviting anyone to join her at the Jenkins Arboretum & Gardens, in Devon PA.  Send Joanne an email message to be sure your contact information is on her Pop Up Event list.  

Our Fall HD Social Gathering
Save the date, Thursday September 29th at 6:30 PM.  This will be our fall HD social gathering.  We will meet at Fellowship House in Conshohocken.  There will enjoy great people, fun activities and a snack.  

Monday Morning Caregiver Chat 
This is a weekly, Monday 10 AM, Facebook chat moderated by Joanne, our HD Care Consultant.  To join the chat contact Joanne. 
Impact of HD
Impact of HD
A video "Impact of HD" shares several brave teenager's thoughts and feelings.

"It's a constant "what if" ..."
   
 "Over whelming"                  

"Is it really worth getting close to people if I can be taken away by this disease?"
My Maybe FutureThree
I just lost it A wife writes in her blog "Threatened by Huntington's"

"I had been taking care of my Dad (I used to 
live with my parents to help take care of him)
 and I just lost it.  I was looking at 
my "maybe future."  
I remember crying to my husband 
and saying, "You aren't going to want 
to go places with me dancing all around 
and not making sense.""

Click here to read more of her blog 
Choosing not to be testedFour
Although some at risk individuals take the blood test to learn their HD  No Test
gene status, most do not.  In an online news story "Huntington's disease: Why those at risk choose not to be tested" learn why several individuals choose not to test.  

"I don't want to find that out now. I'm half way through. The longer you go without showing signs, there is more hope you don't have it."
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