PHACE Conference

[Karla Hall]

PHACE Syndrome: the Families, the Physicians, and the Facts
September 16th & 17th, 2010
Milwaukee, WI

This conference is sponsored by: Children’s Hospital of Wisconsin, Medical College of Wisconsin, the National Organization of Vascular Anomalies, and HIG (Hemangioma Investigator Group)

Schedule for the Family Conference
• Thursday, September 16, 2010
o 12:30 Registration/Event Check-In
o 1:00-5:00 Family Conference
o Following the conference: Family dinner and social event
• Friday, September 17, 2010
o 8:30 Continental breakfast
o 9:30-3:30 Family Conference (includes luncheon)

Event Highlights
2 day Educational Conference:
• Overview and update on PHACE syndrome
• Radiology imaging in PHACE syndrome
• Neurological issues that can be a challenge to individuals with PHACE
• Treatment and management guidelines
• Social implications of facial differences
• Laser therapy for hemangiomas
• Research update
Social Event Thursday Evening with dinner
(Reception, Dinner and Entertainment tentatively set at Betty Brinn Children’s Museum)

Registration
• Cost: Free for PHACE families and includes everything listed in this section
• How to register: To register electronically E-mail: jlehman@mcw.edu and request a registration form or call Jennefer at 414-955-2818 and you can register over the phone. Registration deadline is August 13th, 2010.
• All educational sessions on Thursday & Friday
• Written educational materials about PHACE syndrome
• Childcare for children 2-8 years old during educational sessions
• Reception, dinner and entertainment on Thursday evening
• Light breakfast on Friday morning from 8:30-9:30
• Lunch on Friday
• There is no charge to the families for anything listed in this section

Why Attend?
There are many reasons to attend the PHACE conference. Here are just a few of them:
• Attendees will leave with a wealth of knowledge about PHACE syndrome
• Opportunities to meet other families facing similar challenges
• Exchange ideas, support and advice

Who Should Attend?
This conference is designed for families of children with PHACE syndrome or anyone that is interested in the care of children with PHACE syndrome from newly diagnosed to the latest research available.

Speakers & Panelists
Denise Adams, MD - University of Cincinnati College of Medicine, Cincinnati Children’s Hospital
Beth Drolet, MD – Medical College of Wisconsin, Children’s Hospital of Wisconsin
Jen Duncan, Director/Founder at PHACE Syndrome Community
Ilona Frieden, MD - University of California, San Francisco
Maria Garzon, MD – Columbia University, Morgan Stanley Hospital
Karla Hall – Executive Director NOVA
Christopher Hess, MD, PhD – University of California, San Francisco
Jennifer Hoag, PhD - Medical College of Wisconsin, Children’s Hospital of Wisconsin
Jensen, John, MD - Medical College of Wisconsin, Children’s Hospital of Wisconsin
Craig Johnson, DO – Medical College of Wisconsin, Children’s Hospital of Wisconsin
Patricia Marik, Psy D - Medical College of Wisconsin, Children’s Hospital of Wisconsin
Denise Metry, MD - Baylor College of Medicine, Texas Children’s Hospital
Orbach, Darren, MD, PhD – Harvard Medical School, Children’s Hospital Boston
Dawn Siegel, MD – Medical College of Wisconsin, Children’s Hospital of Wisconsin
Other Speakers TBD

Conference location
The conference takes place at the Children's Health Education Center located at
1533 N. RiverCenter Dr.
Milwaukee, WI 53212
(414)765-9355 phone
Map available at this website
http://www.chw.org/display/PPF/DocID/20530/router.asp

Where to Stay?
Comfort Inn Downtown Lakeshore: Rooms $79 plus tax. Has a shuttle to/from Children’s Health Education Center for families. No pool. There is a block of rooms set aside. Address: 916 East State Street, Milwaukee, WI, US, 53202 Phone: (414) 276-8800. Mention PHACE conference for discount room rate. Deadline for this rate is August 15, 2010.
There are many other hotels in the area also.

We have also secured discounted passes for the Paradise Landing Indoor Waterpark for $10 each, at the nearby Hilton Milwaukee City Center downtown. The passes are available for use that Friday from 3-10pm and Saturday from 9am-10pm. Just mention that you are with the PHACE/Children’s Hospital Group when you purchase the passes at the water park.

[Karla Hall]

Looking forward to seeing you all in Milwaukee. Exciting new information will be shared- we should all expect to learn a lot.

If you did not send your questions to my email by now there will be a chance to submit them at registration on Thursday. Look for Roy or myself- we will be collecting the question cards.