Philly Cure HD      
Notes & News 
for our local 
HD Community

PHILLY CURE HD                                                                   April, 2016
Donate Today_

In This Issue
Upcoming EventsUpcoming
Shop for Our Cause Shop for our Cause
Now until May 7,th you can shop and 10% of your purchase will be donated to our 2016 Philly Cure HD Walk.   Shop this special online sale at Stelladot.com or visit the pop up store at the Walk on April 17th.  

Caregivers Gathering
April 4th, 6:30 to 8:30 PM.  Our HD Caregivers meet every other month.  Please RSVP.

1st PENN Symposium on HD for Patients and Caregivers
April 8th, 8:30 to 12 PM.  Presented by Penn Medicine.  See brochure for details and registration information. 

Join Us_ Our Annual Philly Cure HD Fundraising Walk
April 17th, 9 AM.  This, our 6th Walk, will again be on the campus of Gwynedd Mercy University, 1325 Sumneytown Pike, Gwynedd, PA.  Click here for more information or to begin fundraising.   

2016 Philly Cure Luau Fundraiser Reserve Today
June 24th, 6:30 PM - 10 PM.  Eat, drink and enjoy a variety of gourmet "Street Food Philly" food truck options along with a delectable selection of Rita's Water Ice flavors.  For more information visit  phillycurehdluau.org.

Monday Morning Caregiver Chat 
This is a weekly, Monday 10 AM, chat moderated by Joanne, our HD Care Consultant, with any caregiver dealing with dementia. Click here  for the chat schedule and for more information. 
Our 2016 Philly Cure HD Walk Promotional VideoVideo
Join Us_
Join us at this year's 2016 Philly Cure HD Fundraising Walk.  If you can't make it you are still encouraged to donate and/or fundraiser for our Walk.

We are once again thankful to Gwynedd Mercy University for allowing us to have our Walk on their campus.  It is a beautiful campus and we especially appreciate that there are no hills!  

Registration starts at 8:30 AM and the walk begins at 9.

Huntington's Disease Facts?Facts

  • Huntington's disease is a rare inherited disorder involving the progressive loss of particular nerve cells in the brain. What is HD_
  • The disease is characterized by dementia of gradually increasing severity leading to the need for full nursing care.
  • In 90 per cent of cases the disease symptoms appear between the ages of 30 and 50.
  • Huntington's disease occurs in about one in 15,000 people across the globe.
  • Huntington's disease is a single gene disorder caused by a mutation in the HD (also known as HTT) gene on chromosome 4.
  • It is an autosomal dominant disease. This means that a single defective gene copy will cause disease.
  • Huntington's disease is caused by a mutation in the HD gene in which the same three bases (CAG) are repeated many more times than normal. This is known as a CAG trinucleotide repeat expansion.
  • In people who don't have Huntington's disease this section of CAG repeats in the gene is usually only repeated 10 to 35 times.
  • In people with Huntington's disease, this section is repeated over 36 times and can be repeated more than 120 times.
These facts and  more are found at What is Huntington's disease?
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