Delaware Valley Chapter of the National Hemophila Foundation

Winning Spirit Newsletter Summer 2010

Senator Greenleaf Recognized for Support of Hemophilia Legislation | From the Executive Director | Happenings | Legislative Updates | Medical Updates | FYI | Viewpoint | Past Newsletters

FYI

nhf bowling

On Sunday, May 2nd, the Scicchitano family of Mt. Carmel, PA held a fundraiser (not their first) to benefit the Delaware Valley Chapter! They raised more than $1,500 at the Coal
Bowl Bowling Center & Arcade on Tioga Street in Coal Township, PA! We can’t thank them enough for keeping our mission in their hearts and for working so hard to run such a fun event for such a great cause! Our heartfelt thanks to the Scicchitano’s, Sam, Jolene, Jake, Seth and Ben!! You can’t underestimate the power of just one family!

nhf bowling

nhf 5k run

Mark Your Calendars!!
Saturday , October 2, 2010
Colegevile, PA
Go to register online: http://www.active.com/donate/gowalkorrun

 

Patient Services Incorporated to Operate the ACCESS Program

Patient Services Incorporated (PSI), a leading health advocacy non-profit, is now operating the ACCESS Program (effective 2/19/09). Advocating for Chronic Conditions, Entitlements and Social Services (ACCESS) has become a 501 © (3) non-profit under PSI and will be known as the “PSI ACCESS Program.” The program, which will be based in Tampa, Florida, will provide Social Security and disability representation to patients diagnosed with Bleeding Disorders, Alpha 1, Chronic Inflammatory Demyelinating Polyneuropathy, Pulmonary Arterial Hypertension, Amyotrophic Lateral Sclerosis and Primary Immune Deficiency. Call 1.888.700.7010 for more information.

Horseshoes for Hemophilia & Grilling for a Cure

To see more info on this annual event click here.

nhf campaign

SPECIAL CAMP NEWS!

It seems early to be thinking about sending the kids off to camp in the Summer of 2010, but we wanted to give you lots of time to get organized so that you can be sure your child will have a spot for one of the camp sessions. Here’s the buzzzzzzz!!

THE GOOD NEWS!
Once again summer of 2010, DVC area kids with hemophilia will have an opportunity to attend The Double “H” Hole in the Woods Camp nestled in the mountains in Lake Luzerne, New York. This camp provides an outdoor Adirondack adventure for children with hemophilia each summer. Modeled after actor Paul Newman’s Hole in the Wall Gang Camp in Connecticut, the Double “H” Camp is a place where children with bleeding disorders can participate in a full range of activities and learn leadership skills, as well. The Delaware Valley Chapter will provide FREE transportation for the following two sessions:

  • SESSION #1: JUNE 25 TO JUNE 30, 2010
  • SESSION #2: AUGUST 5 TO AUGUST 10, 2010

FOR AN APPLICATION, CALL THE DVC OFFICE AT 215-885-6500 OR ASK YOUR TREATMENT CENTER TEAM. THE DEADLINE FOR APPLICATION IS APRIL 1, 2010 AND SPACES ARE VERY LIMITED!!

CAMP DRAGONFLY FOREST!
Even if your child attends one of the weeks at Double “H” Hole in the Woods Ranch, they may be eligible to attend Camp Dragonfly Forest, right here in the Delaware Valley area!! This camp is free to all campers!! Camp Dragonfly Forest (for kids with bleeding disorders) will be held: July 10-15, 2010. Call Dragonfly Forest directly with questions or to receive an application: 610-298-1820 (deadline is April 1st!!) and check out www.dragonflyforest.org for more details (including on-line registration)!!

Factor Assistance Programs Offered by Manufacturers

Manufacturers of clotting factor concentrates can possibly provide assistance to you in the event of a lapse or loss of health insurance.  The following resources can help connect you with a patient assistance program:

  • HANDI, National Hemophilia Foundation’s information resource center:   800.42.HANDI or handi@hemophilia.org
  • Advocating for Chronic Conditions, Entitlements and Social Services (ACCESS):   888.700.7010
  • Patient Services Incorporated: 800.366.7741 or www.uneedpsi.org

Contact the manufacturers directly to learn about program criteria, eligibility guidelines and other details or link their websites from www.hemophiliasupport.org

An Easy Way to Help the DVC!!!

The Delaware Valley Chapter has partnered with Capital One to launch our newest fundraising program and it will help us earn money doing what you do every day!! Just use our custom credit card and 1% of purchases made with the card will be donated to our organization. Plus, we’ll get a $25 bonus donation when you make your first purchase. The card comes with a competitive rate and there is no annual fee, so sharing your passion—and your support – is easy and automatic. Complete information is available at www.hemophiliasupport.org. Apply today!

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