Philly Cure HDNotes & News 
for our local 
HD Community

Philly Cure HD                           Issue # 1, January, 2015
In This Issue
Upcoming Events
Caregivers Gathering 
February 3rd, 6:30 to 8:30 PM. Our HD Caregivers enjoy and appreciate getting together and hope that others will join them.  Click here to RSVP and for directions to our February 3rd gathering.
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Hearts of Hope HD Community Gathering 
February 21st, 10 AM to 12 PM.  We enjoy getting together.  Join us for some heart filled fun.  Click here to RSVP and for directions to the Central Community Center.
Walk Photos
Photos from last year
2015 Fundraising Walk
April 19th.  Mark your 2015 calendar or better yet begin fundraising.  This year's annual fundraising walk will be bigger and better.  Plan to join us the afternoon of April 19th at a new and better location, Gwynedd Mercy University.
1st Annual Pig Roast
Jun 27th.  Save the date for our 1st Annual Pig Roast.  This fundraiser will have fabulous food at a fabulous venue in Gladwyne.
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Proud of Our Past and Primed for the Future
Proud of our Past
We are proud of all we accomplished during 2014.  Our HD caregivers are now meeting every other month and we held two CPR training sessions for them. Our community enjoyed three special social gatherings; a luau, a trip to the rodeo, and a winter holiday luncheon. We've updated our website with helpful HD information and have an active presence on social media; facebook, google+, youtube, and pinterest; where we share local and worldwide HD news and motivational and helpful information and tips. We are thrilled with the number of friends who supported our two major fundraising events; our May Walk and our June HD Cure Classic golf outing. We kept in touch through our monthly e-newsletter, Notes & News for our HD community.  Our full time HD Care Consultant, Joanne Luz, offered direct support to 99 clients, including 32 new clients, for many of the challenges of living with HD. 
Primed for the Future
Philly Cure HD remains committed to supporting our local Huntington's disease community and HD research.  Maria Ward a wife, a mother, and now and HD caregiver wrote that HD is like

"a poisonous weed, slowly wrapping its stems and leaves around my hubby, taking the light away from him and stealing the good nourishment from him. as it creeps and tangles itself deeper and deeper into my husbands and our lives....I want to scream at it, shout at it to stop. It frustrates and angers me that there is no weed killer yet to kill this relentless ruthless weed. Everyday it grows a little more and my husbands light shines a little less, it breaks my heart."

Marie Ward Video
Click to View Marie Ward's Video Diary
As we prepare for 2015, we invite everyone to join us in our support to the HD community.  Philly Cure HD is prepared to do what we can to improve the quality of lives for families and to work to eradicate the poisonous HD weed that relentless grows and blocks the light for so many individuals and families.

Support our efforts.  Donate now.  There is still time to make a 2014 donation to Philly Cure HD.
More
Resources Available

Our HD Care Consultant, Joanne Luz, is available to respond to your questions, connect you to resources an even just to chat.  Call her at 215-219-3521 or email her at joannehdcare@phillycurehd.org.  
 

Attorney Graham McDonald can help with advanced planning such as wills, living wills, and power of attorney.  Call 215-219-3521 or email info@phillycurehd.org.

 

Philly Cure HD has two informative Huntington's disease documentaries that we would love to share; "Alive and Well" and "Do You Really want to Know".  Contact Joanne  at 215-219-3521 to arrange a showing. 
 

You Can Help
Sponsors and volunteers are needed for our April 19th Fundraising Walk. Call 215-219-3521 or email info@phillycurehd.org.

Philly Cure HD | www.phillycurehd.org