I spent last weekend in Newport Beach at the Vascular Birthmarks Foundation Conference. I first presented at their conference 4 years ago, soon after my second son was born with a port wine stain and have been associated with them ever since. I have loved the opportunitity to use my professional skills in a way that can help others.
I am on the VBF expert panel as a developmental specialist. This year at the conference I facilitated an adolescent support group, presented during the scientific symposium on the psychosocial implications of vascular birthmarks, and did 5 hours of family support groups. If you're not familiar with what vascular birthmarks are I'd encourage you to click on the link to the VBF and see the images. The conference is always a powerful experience. I appreciate hearing the stories of parents and individuals who talk about their experience of living with a visible difference. It is always excellent evidence that beauty is in who we are. It's moving to see the pioneering work of doctors developing treatment for things that were previously considered untreatable. It's really refreshing to connect with and support families as they try to balance risks and unknowns of treatment with the best outcomes for their children. I love the association with incredible doctors, board members, and staff that I have established over the years. My friend Linda, founded the organization after her daughter was born with a hemangioma. Since then the VBF has helped more than 50,000 patients network into treatment. A great reminder that one person can make a difference and dramatically change the lives of many and when life gives you something unexpected it's just an opportunity to help others.
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6 comments:
happy to hear it all went so well!
WELCOME BACK!
That's terrific! What a great contribution you're making. Thanks for sharing this.
my friend has a baby with hemangioma, and it's amazing how many surgeries that poor little girl has gone through in her 2 years of life. I am glad there are people like you out there to spread awareness and offer help :)
Leslie, you are amazing.
One person CAN make a difference. Thanks for the reminder.
Glad you're back--glad it went well.
KUDOS to you!
xo
so glad it went well. and i was in fullerton, CA, just 30 min from newport beach last weekend. why did we not figure that out?!! i would have driven down to see you one evening
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