Philly Cure HD      
Notes & News 
for our local 
HD Community
PHILLY CURE HD                                                         JANUARY, 2016
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Upcoming EventsUpcoming
Caregivers Gathering
February 2nd, 6:30 to 8:30 PM.  Our HD Caregivers meet every other month. Please RSVP. 

Our Annual Philly Cure HD Walk
We will post our Walk date soon on our website as well as share the April Walk date in future Newsletters.   We hope you will be able to join us. 

Monday Morning Caregiver Chat 
This is a weekly, Monday 10 AM, chat moderated by Joanne, our HD Care Consultant, with any of our Huntington's disease. Joanne is switching over to Facebook for these chats.  Click here to learn how to join us for our Caregiver Chat.
Some 2015 Philly Cure HD HighlightsHighlights
HighlightsPhilly Cure HD's Board is delighted to share some of our 2015 highlights with you.

It was our pleasure to support Huntington's disease research this year with a donation of $12,500 to the Hereditary Disease Foundation and to the Davidson Laboratory.  

We had two major fund raising efforts.  In April 154 people joined us for our Fundraising Walk and then at the end of June we had a tremendously successful fundraising Luau.   

Throughout the year 140 individuals received direct support from our HD Care Consultant, Joanne Luz. This includes a record number of new clients, 65.  

Our use of social media increases the number of people supported exponentially as Philly Cure HD's Facebook page has 324 likes and 194 posts were shared on our page throughout the year.  Joanne has 283 Facebook friends who received education and support through her posts as well.  Our Philly Cure HD Pinterest page gets an average of 17 views a day and has 16 boards with 157 pins, all Huntington's disease related, and has a following of 69 people. 

There were 12 caregivers have attended one or more of our 6 Caregiver Gatherings in 2015.  Plus fun and fellowship was enjoyed by about 23 people through our three HD Social Gatherings; Hearts of Hope, Fall Fun On the Farm and Warm Up to Winter.  

Joanne has kept in contact with the local neurologists specializing in HD as well as sent out a letter of introduction to 89 other neurologists to assure they are aware of our resources for the Huntington's disease community. 

We are truly proud of our work supporting the Huntington's disease community.

The Board: Susan Arnold, Delane Branson, Tom Cancelmo, Betsy Cancelmo, Flo Gallagher, Florence Gunn, Robert Madden, Cullen McCallum, Gramm McDonald, Ian McEwen, Sandi McEwen, Jonathan Monkemeyer, Joseph Mooney, Angela Smith, Tyron Smith, and Jay Tolson and our Gwynedd Mercy University Friends/Supporters: Lindsay Brewer, Michael Czerwonka, Liz Mannino, Joe Sparks, and Sean Welsh.  
Our HD Community Stays ConnectedConnected
Philly Cure HD Connections Philly Cure HD has and will continue to be an important catalyst for our Huntington's disease community to make and maintain connections with each other, with the medical and support resources, and with HD research community.  Our monthly Notes & News E-Newsletter, our social media (Facebook, Google+, Pinterest, and You-tube), our HD social gatherings and fundraisers, and our HD Care Consultant all work to strengthen each person in our local as well as our global HD community.  

Stay connected as together we support the local Huntington's disease community, educate the greater community about HD and the impact this neuro degenerative genetic disorder has on individuals and families, and support HD research for treatments and a cure. 
Some News Stories from 2015News
Here are just three Huntington's disease news stories from 2015.  Click on any photos or titles to read the full story.
Aspirin

from November 30, 2015
HD Therapy
from October 23, 2015
Oil


from January 15, 2015
Photos From Philly Cure HD's 2015 EventsPhotos
Click on any photo to see more.
Caregiver Chat
Monday Morning Online Caregiver Chat.
Hearts of Hope Social Gathering
Our Hearts of Hope HD Social Event.
2015 Walk Photos
The 2015 Fundraising Walk
Luau Fundraiser Photos
First Annual Luau Fundraiser
Fun On The Farm Photos
Fall Fun On The Farm 
HD Social
Dec. 2015 HD Social Event
Warm Up To Winter
HD Social
Looking Ahead to 2016Looking
Looking Ahead
Looking ahead, 2016 will be another busy year for Philly Cure HD.  With so much exciting HD research news in 2015 we can't wait to see what news we can share with you in 2016.  Our 2016 fundraisers will bring in the funds to once again make a generous contributions to HD research. The annual Walk Fundraiser, will be a Sunday in April.  Then in June we look forward to the 2nd annual Luau Fundraiser.  Our HD Care Consultant, Joanne Luz, will be available full time to the local HD community.  Our quarterly HD social events and every other month caregiver gatherings will continue.  So will our outreach efforts with local neurologists, nursing homes, and other medical and support providers.  We are glad to have you partner in our mission to offer support to the local Huntington's disease community, educate the greater community about HD and the impact this neuro degenerative genetic disorder has on individuals and families, and to support HD research.
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