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

March 28, 2012 by nohandsbutours Eileen, HepB+ 5 Comments

Hepatitis B Foundation 2012 “B” Informed Parent Conference
An Outreach Program for Parents of Children Chronically Infected with HBV
Saturday, May 19th
9:00-4:30
Holiday Inn Express Midtown
1305 Walnut Street Philadelphia, PA

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.





5 Responses to “Hep B Parents: 10 Reasons You Should Get Yourself to Philly”

  1. John C says:

    Job Well Done ! Thankfully, I am not in the world of HBV. I just wanted the person who put together the “10-Reasons to visit Philly” they did a masterful job. Any “B” parent reading this list
    would be foolish not to try and get to this conference. I wonder if they will make and distribute a Disk of this entire conference or make it available on the Internet for those who cannot make it to the event ?

    Best of Luck to those running, participating and attending the conference.

    J C

  2. Eileen says:

    I’ve had many questions about the possibility of a disk, for those who can’t attend the event. It would be a long disk, as it’s a full day conference, but I’ll check into it.

  3. Anna says:

    Job well done…

  4. […] Read more… This entry was posted in Adoption, General Hep B info, Hep B Support, Pediatrics, Pediatrics and tagged HBV, Hepatitis B, special needs adoption. Bookmark the permalink. ← United and Strong… […]

  5. […] The Hepatitis B Foundation will be hosting the B Informed Parent Conference in downtown Philadelphia on Saturday, May 19th. This will be an incredible opportunity for parents of kids with hepatitis B to meet with leading pediatric experts in the field that address both medical issues and the personal challenges of parenting a child with hepatitis B. It is also a wonderful opportunity for parents to meet face-to-face with other families facing similar challenges.  Be sure to check out the detailed program agenda, and if you are a family with a child living with HBV, or know of a family living with HBV, please encourage them to attend this unique event. Pre-registration is required, though there is no charge for the event. And if that’s not enough, here are 10 reasons you need to get yourself to Philly for this event… […]

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