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Alan Franciscus
HCV Advocate

Monday, April 2, 2012

Hepatitis B Foundation 2012 “B” Informed Parent Conference: May 19, 2012 Philadelphia PA

Hepatitis B Foundation 2012 “B” Informed Parent Conference
An Outreach Program for Parents of Children Chronically Infected with HBV
Holiday Inn Express Midtown, 1305 Walnut St. Philadelphia, PA
9 a.m.-4:30 p.m. Saturday, May 19th

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

3. The Hepatitis B Foundation is amazing. You’ll leave feeling like you’ve gained new family members—some seriously smart cousins who also happen to be fun, encouraging, and supportive. Years ago, when I went to my first conference, the president of the Hepatitis B Foundation, Dr. Timothy Block, sat with a group of parents at a table and using Coke cans and plastic silverware as props, explained viral mutations. It was interesting. It was informative. I understood it! These people do not grow on trees. 

4. Dr. Barbara Haber, Pediatric Hepatologist at Merck & Co. The Hepatitis B Foundation calls them “The Big 7”, the seven hepatologists who are the thought leaders in research and treatment of kids with Hep B. This conference is bringing together two of them. Dr. Haber has seen it all when it comes to HBV and will present for an hour, sharing her extensive knowledge and experience. 

5. Dr. Karen Murray, Division Chief of Pediatric Gastroenterology and Hepatology at Seattle Children’s Hospital, another of “the Big 7”, will talk for an hour specifically about HBV treatment options. Nearly 6 years ago when we came home from China with our daughter, there were two treatment options for children with Hep B. That’s changed now and is continuing to change. Dr. Murray is actively involved in research and will share what the future holds for HBV treatment–not just for kids in the immune clearance stage of the disease, but for the majority of kids, those in the immune tolerant stage as well. And if you don’t know what that means, get to Philly! 

6. Dr. Thomas London has had a distinguished career as a leader in Hepatitis B research and was actually a member of the team that first discovered the virus. This man knows HBV like few people in the world. Years ago, at a B Informed conference, Dr. London took the time to look at my daughter’s labs and offer his thoughts. This man helped discover the virus and he shared with me what he’d do if this were his own child! I listened closely. This year, Drs. London, Murray, and Haber will spend an hour taking questions from the audience. 

7. Paul R. Cohen, Esq., a partner in the law firm of Jenei & Cohen, is a new and welcome addition to the conference. Every year, invariably, parents ask questions along the lines of: “When do I have to tell someone about my child’s HBV?” or “What are my child’s rights?” or “Can a school refuse my child admittance based on their HBV status?” These are sticky questions, and we’ll get expert answers. 

8. It’s Free. Yes, FREE! And that even includes breakfast and lunch. You’ll only need to get yourself out to Philadelphia. You can probably score a plane ticket for less money than you’ll spend on your child’s next set of labs. 

9. Support. You’ll get it. HBV can be a lonely special need. Many parents don’t feel comfortable disclosing even to close friends. Here, you’ll be surrounded by parents who understand exactly where you’re coming from. 

10. Philly Steak and Cheese Sandwiches. I’ve heard they’re really, really good.

Pre-register for the conference through the Hepatitis B Foundation online at www.HepB.org or by phone at 215-489-4900.

PS: Christine M. Kukka, the Project Manager at the HBV Advocate will be one of the featured speakers

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