Hep B Blog

Hep B Parents: 10 Reasons You Should Get Yourself to Philly

Attention parents of children living with Hepatitis B. Please join the Hepatitis B Foundation for it’s “2012 B Informed Parent Conference“, Saturday May 19th in Philadelphia. It’s going to be an incredible program filled with expert, pediatric guest speakers. It’s also a wonderful opportunity for parents to meet face-to-face to talk about raising kids with HBV.  Think about it, clear your schedule, register, and join us for the day. And if that isn’t enough, here are 10 Reasons You Should Get Yourself to Philly, expressed by Eileen, a good friend of HBF…

1. The “B Informed” Conference for parents of children with Hepatitis B happens just once a year. You do not want to miss this.

2. You will get answers. No matter where your child is on the spectrum, I know you’ve got questions. You’re going to get those questions answered. This isn’t a doctor’s appointment, there isn’t a waiting room full of patients, the doctor’s hand isn’t already on the doorknob. Ask all the questions you want to ask and ask until the lightbulb turns on and you get it. You’ll go home a more confident, better informed advocate for your child.

Read more…

United and Strong…

I have the best job in the world. I get to walk all around Philadelphia, meet people, and talk with them to find win-win collaboration opportunities. Creativity and innovation are required at all times for adaptations to the ever-changing environment in a diverse and bustling city. My schedule is rarely the same from one week to another—productive late night meetings and well-attended weekend health fairs make me happy. I am never bored.

Community work on the local level is challenging, yet extremely rewarding. This is the level where the lack of resources can be felt most significantly. This is also the level where the fruit of our efforts are the most direct and observable. Being the program manager for Philadelphia’s local hepatitis B coalition, driving day-to-day progress to accomplish the coalition partners’ common goals, has caused me to place high value on partnership and collaboration. There is a Chinese idiom that says “three ignorant cobblers together exceed a Zhuge Liang”. Zhuge Liang was a genius war strategist during the Three Kingdom era at the turn of the 2nd Century. The idiom emphasizes the importance of collective wisdom. Since our community partners are smart and savvy, and could never be described as “ignorant cobblers”, our collective wisdom and effort have achieved great things and made significant impacts in the Philadelphia community—even with the limited resources available to us.

Imagine my excitement when the individual local grassroots hep B campaigns from around the U.S. came together and decided to form a national coalition—Hep B United (the Philadelphia campaign becomes Hep B United Philadelphia). Having a formal national coalition will help local campaigns to become more versatile and more effective, both collectively and individually. Having a national coalition means there will be a unified body of leaders that are connected to the local efforts. They will be able to work with federal and national partners without losing touch with the local campaigns. A unified national presence and identity will also strengthen the ongoing advocacy work to raise awareness among policy makers. Within the national coalition, resource sharing will become more efficient, preventing redundancy or duplication. The quality of our communication across the nation will also improve due to a stronger infrastructure. The local campaigns will enjoy elevated profile thanks to the national-local one-two punch of increased exposure. Ultimately, all of these benefits will help us better serve our communities.

The creation of this national coalition has been in the works for months. The Hepatitis B Foundation is one of the main leaders, and has been faithfully moving the progress along throughout the whole process. As of last week, the official logo for the coalition was voted on and approved. And in the upcoming weeks, each local campaign will gradually update their materials, online and printed, in alignment with the national campaign. While getting a new name is certainly a fresh new beginning, we continue to work with the same integrity and diligence that will always be our identity.

Hep B United. Together, we cannot fail.

Kuan-Lung Daniel Chen, MPH, CPH

Public Health Program Manager

Hepatitis B Foundation

Purchase a Raffle ticket to Benefit the Hepatitis B Foundation and WIN a 7-Day Cruise for Two!

Raffle to Benefit the Hepatitis B Foundation

Friday, April 27th at 6:30 pm the Hepatitis B Foundation  is hosting it’s signature fund raising event of the year at the PineCrest Country Club in Landsdale, Pennsylvania. It will be a wonderful evening filled with fine dining, dancing, and a silent and live auction. On that evening HBF is proud to honor Dr. Howard Koh, the Assistant Secretary for the United Sates Health and Human Services (HHS), with the inaugural Baruch S. Blumberg Prize for his leadership in creating the first HHS Action Plan for Viral Hepatitis.

We know not everyone can make it to Landsdale on the evening of April 27th, but we do hope you will show your support and purchase a raffle ticket to benefit the Hepatitis B Foundation and possibly WIN a 7 day, 5-star cruise for 2! The good news is that you do not need to be present to win. Check out the details about the cruise….

7 DAY CRUISE FOR TWO!!

Holland America Line Logo

Choice of Destination:

Alaska, the Caribbean, Mexico

or Canada/New England

$100 per Raffle Ticket

Valued up to $3,300!!

Drawing at CRYSTAL BALL, April 27, 2012

(Winner does not need to be present)

 

 

When you step aboard one of the five-star ships of Holland America Line, you will experience a voyage unlike any other. You can choose any cruise for two (same stateroom) up to seven days in length (based on minimum ocean view stateroom) to Alaska, the Caribbean, Mexico or Canada/New England.

Your journey will include extraordinary dining, spacious staterooms, elegant surroundings and days filled with new discoveries and gracious pampering by an award-wining crew. You can choose to partake in as many – or as few – activities as you wish, from the renowned Greenhouse Spa and Salon, to cooking demonstrations and wine tasting in the Culinary Arts Center, and much more. Or simply relax and enjoy the spectacular scenery from the beautiful wrap-around teak deck.

The certificate has no expiration date. The certificate may be applied to other cabin categories or cruise trades at an additional cost. This cruise! certificate is valued up to $3,300!

Travel to and from arrival ports, taxes, onboard charges, shore excursions and hotel services are not included. Click here for important cruise information.

Update on the Adoption of a Waiting Child with Hepatitis B

We are very pleased to share a very special update on the status of William, a waiting child  living with chronic hepatitis B, who captured the hearts of the Hepatitis B Foundation staff. This update comes from Nathalie, Adoption Advocacy Director at An Orphan’s Wish…

“I am thrilled to report that William is in the process of being adopted by his forever family, where he will join his new, wonderful Mom and Dad and his two-new sisters. William’s youngest sister is also adopted from China. When William’s mother contacted An Orphan’s Wish to inquire about him, she had some questions about the implications of daily living with an HBV positive child, and how it affects the child’s life and the life of other family members. The information the Hepatitis B Foundation provided was extremely helpful in answering the family’s questions, and in providing them with enough knowledge to ask informed questions of health care providers. Information provided by the Hepatitis B Foundation allowed this prospective family to have peace of mind about William’s hepatitis B diagnosis, realizing that it is a manageable chronic condition. This enabled them to focus on the specifics of William rather than his HBV. William’s family very quickly responded with more questions for me about his personality, his likes and his dislikes, his dreams and his hopes, rather than focusing on his HBV. They were adopting a son they were thrilled to parent, and thought little of his HBV diagnosis.

As an adoption advocate, the information provided by the Hepatitis B Foundation has been invaluable in educating me about hepatitis B, and HBV positive children. I feel that I have a much better understanding of this chronic condition, and I am in a much better position to answer questions from families considering the adoption of an HBV positive child. I will continue to refer families inquiring about hepatitis B positive children to the Hepatitis B Foundation. They are a wonderful resource! “

Nathalie

The Hepatitis B Foundation wishes only the best for William, his new family, adoption advocates like Nathalie, and all of the children out there who are waiting, living with HBV.