Delaware Valley Chapter of the National Hemophila Foundation

Winning Spirit Newsletter Winter 2010

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FYI

BBQ Cookoff for A Cure & Horseshoes for Hemophilia

Saturday, May 22, 2010

Hatfield American Legion
2100 Koffel Road, Hatfield, PA
Time: 3:00 pm - ??

LIVE BAND * DJ * FOOD

Entrance Fees: $20.00 per person
$40.00 per family (limit 5, each additional member $5.00)
Children under 5 FREE

Includes: Moon bounce, food, soda, water, music, taste testing

$10.00 donation will get you a commemorative mug for
“ALL YOU CAN DRINK BEER”

1st Annual “Horseshoe for Hemophilia”! Tournament
215-872-2222
Single elimination tournament
$50.00 per team—PRE-REGISTERED MAY 1st
After May 1st: $60.00
Cash prizes to top four teams PLUS trophies and t-shirts.
Time: 12:00pm - ???

Event contact: Steve Kowalczyk
Steve26@comcast.net, 215-872-2222

Cooking Contest
TEAM ENTERANCE FEE: $150.00
Includes t-shirts for a max of 7 on a team

Category
Ribs
Chicken
Chef's Choice

Turn in times:
Chicken: 3pm
Ribs: 3:30pm
Chef's Choice: 4pm

Must bring your own BBQ equipment Ex: grill, smoker, cooking tools etc…

ALL FOOD must be cooked on site

AWARDS
Grand Champion – $200 & trophy
1st place in each category – $150 & trophy
2nd place in each category – $100 & trophy
3rd place in each trophy

Contact: Tom Rowe: 267-249-8389
tprowe@yahoo.com

Brochure, BBQ application, Horseshoe registration, Judges Sign up

The Delaware Valley chapter has received a $2,500 grant

DVC grantThe Delaware Valley Chapter has received a $2,500 technology grant from Verizon Foundation to support technology enhancements at the office. “Verizon is proud to help improve the quality of life for children and families by empowering the community with innovative tools and resources,” said Daniel J. Reavy, Director of External Affairs for Verizon Pennsylvania. “We’re investing in programs, such as our partnership with DVC/NHF to touch people’s lives by focusing on health and family safety in the 21st century.”

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.

Pennsylvania Chapters of the National Hemophilia Foundation Annual Awareness Day

Please mark your calendars for Tuesday, April 20, 2010 for the Pennsylvania Chapters of the National Hemophilia Foundation Annual Awareness Day in Harrisburg, PA. This year, our visits will focus on the PA Senate and we hope you will plan to join us for this important state day!! Bus transportation will be provided from the Philadelphia and Pittsburgh areas.

We need your help and participation again this year. Registration forms and more details will follow in near future.

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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