Welcome to the European Chapter of the Vascular Birthmarks Foundation, VBF Europe!

Every year in the United States, 40,000 children are born with a vascular birthmark, 85% of which are in the head and neck area. Statistics show us that the incidence is the same in other countries. These birthmarks include:

• Hemangiomas, the most common type of vascular birthmark
• Port Wine Stains
• Venous Malformations

No one knows why vascular birthmarks occur, but treatment guidelines are changing.

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Alderhey Childrens Hospital Eaton Road
Liverpool

Beginning in January 2009, Dr Waner will be visiting Liverpool on a regular basis to see patients and perform sugeries, working in conjunction with Mr Liew Consultant plastic surgeon.

We have a large vascular birtmarks service including a multidisciplinary team and a large vascular service.

Patients may contact:

cath.gorst@alderhey.nhs.uk

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See how our Chapter celebrated VBF Day of Awareness last year!

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SHAI’S STORY: Living with Multiple Hemangioma

Meet Shai Pearce, our newest Representative for VBF Europe. Read her incredible story of growing up with multiple hemangioma

I don’t really know where to start this.. But here goes. I was born in October 1990 and I seemed like a normal baby. However, when I was six weeks old my parents started to notice little red marks on the right side of my face and on the top right side of my back. They appeared like little tiny scratches at first, but they soon began to get bigger. My parents took me to the Doctor and he told my mum that they would disappear, but he still referred me to a paediatrician at the hospital.

The marks soon swelled and I was diagnosed with Multiple Hemangioma. It wasn’t able to be treated until it had grown to full size. I had a large one on the right side of my face, from my eye to just below my ear. One on my nose, lip, left ear, a huge one on my back which was about the size of a football and also one in my knee that stopped me from walking for a few months.

One night when my Dad was feeding me he noticed that I was taking an extra hitched breath when breathing. I was taken to hospital again and they discovered that I had one growing in my wind pipe, that was beginning to block it and making breathing hard. The Doctor’s said that this one could not be left, because eventually it would block completely and I would probably stop breathing, so they gave me steroids to shrink it. This worked, however I was then very prone to infections because it had weakened my immune system.

After it had finished involuting, I was left with very saggy skin on my face. My back was still quite large, but it had shrunk enough for me to have surgery. So at 2 ½ I had my first major operation to remove the Hemangioma from my back. The operation was originally only meant to last a few hours, however it ended up lasting 10! And I nearly had to have a blood transfusion. My mum says she remembers telling my Dad that she thought I was going to die and that it was an awful time. However I made it through and I was left with a scar stretching along the top of my back. The next operation I had was on my face. For this, they had to cut my ear off, and pull the excess skin back behind where my ear would be, and then put my ear back on. So I’m left with a scar behind my ear. The Hemangioma was too large to get rid of completely, so I still have a scar on my face. I also have a little bit of a fat lip, but its hardly noticeable. My other ear that had it on had to be completely reshaped because the Hemangioma had ruined it really, so my left ear is different to my right. The one on my nose was completely removed with no scarring. The one in my knee shrunk and went on its own. In all I had about four operations, the last one I had was in year 3 at school. After this my surgeon said that they would have to wait until I was 16, and then I could come back and see if anything more could be done.

In April 2007 I went back to the same Surgeon and he said that I could have another operation to tighten the skin up more as I had obviously grown. So on July 5th I had the operation, and I was awake, which was absolutely terrifying for me. However everything went well, and my scar is now even smoother, which I am pleased about, but I will be returning in June this year to see if there’s anything else that can be done.

Living with Multiple Hemangioma has been hard at times. Although I have been lucky that I haven’t really been bullied about it. I think I owe this to my Mum. She has always said to me since I was little that I was no different to anybody else, and I was to take no rubbish from nobody. My Mum made me a strong child and now a strong young adult. She pushed me to do everything that I might find scary, especially with scars. We dealt with people staring together because my sisters were older than me, it was just me and my mum against the world when I was little. I am insecure sometimes, but I’ve come to accept that this is the way I look, and if anyone is ever mean to me about it, its them with the problem, not me!

Me and my parents were so surprised when I found this website, I think its brilliant because when I was going through this as a baby, there wasn’t really anything for my parents. This site is great because it enables frightened parents, or people like myself to come and talk about their experiences and realize that there’s lots of people out there who are going through, or have been through what you have. It helps people not to feel alone, and that there is light at the end of the tunnel.

Here are some pictures to show how it looked when I was a baby, and how it looks now I’m 17.

The Vascular Birthmark Foundation
Announces the 2010 “Mark of Beauty” Gala
And the 2010 Vascular Birthmarks Conference with Dr. Roy Geronemus and
The Laser & Skin Surgery Center of New York

 

2010 Conference Sponsor

It’s that time again – registration is now open for the VBF Annual Vascular Birthmarks Conference. We are very excited to announce this year’s conference will be held in New York City on Saturday, October 9, 2010. This year the conference is one full day. In addition, we are having our 2nd “Mark of Beauty” Gala once again at the beautiful Hudson Theatre located at 145 West 44th Street from 7pm until 10pm Friday, October 8, 2010.

The Conference:

This year’s conference will be held at New York University (NYU), Farkas Auditorium, 550 First Avenue in New York City. We only have 50 FREE HOTEL ROOMS for ONE NIGHT (Friday evening) for the first 50 families who register. Once the rooms are gone, we will continue to accept registrations for the conference but you will need to secure your own lodging. You may be able to find discounted rooms at Hotels.com or Expedia.com or other such discounted sites. NOTE: The 50 FREE ROOMS are for families who do not live in the immediate NYC region.

This year we will require a credit card for everyone who registers, even if you get a free room and we waive all fees. If you do not show and you have a free room, your credit card will be charged $269 plus tax (cost to VBF). So, please make sure you are attending when you register. We will give a 100% refund if you cancel 30 days prior to the conference (by September 8, 2010) or a 50% refund if you cancel by September 22nd. There will be no refund after September 23, 2010. Lodging will be at the Affinia Dumont or the Affinia Shelburne (both close to the conference and clinic locations).

There is a $100 conference/clinic fee per family. This fee entitles the family to admission to the conference, a free clinic appointment and breakfast and lunch, daycare (if needed) and attendance to special sessions (make-up, psychotherapy, support, or legal-insurance services). If there is a financial hardship, fees will be waived but you must contact VBF Ex. Asst. Basia Joyce to apply for a scholarship. Her email is BasiaJim99@nycap.rr.com. If you are only attending the conference or only attending a clinic session, the fee is still only $100. We urge all families to attend the conference and to sign up for a very valuable clinic session.

The conference check-in is at 7:30am and conference sessions begin at 8:30am. There will be two distinct paths this year. Path A = Hemangioma presentations and Path B = Malformation presentations (including Port Wine Stains, AVMs, SWS, and KTS Syndromes, Venous, Lymphatic, and Arteriovenous Malformations). Lunch is provided for all attendees from 12:30-1:00pm.

Clinic sessions will be from 1:00 to 6:00 pm at the Laser & Skin Surgery Center of New York, 317 East 34 Street – a short walk from the NYU conference. There will be four teams this year: Team 1: Hemangioma (Leaders: Dr. Hochman and Dr. Levitin); Team 2: PWS (Leaders: Dr. Nelson, Dr. Geronemus, Dr. Mihm); Team 3: Malformations & Syndromes of the Head and Neck (Leaders: Dr. Comi and Dr. Fay); Team 4: Malformations & Syndromes of the Extremities (Dr. Rosen and Dr. Delfanian). Other experts will be on each team and will be available for meeting with families throughout the day.

Special sessions will be held during the day for make up, psychotherapy, insurance-legal issues, and support.
See links to registration form on-line or you can download and print and mail in the form. We need at least one clear photo for each patient so that we can insure that the patient is put on the correct team for evaluation.

A tentative speaker’s itinerary can be found at the link indicated for SPEAKERS ITINERARY

The Gala:

VBF is very excited to announce that the Chairs for our 2010 “Mark of Beauty” gala are Marc and Hyleri Katzenberg.

Hyleri is the founder of the former Belle Foundation, a charity established to help families with hemangiomas. Hyleri and VBF President and Founder Dr. Linda Rozell-Shannon worked together during the first few years of the establishment of VBF. Hyleri was very instrumental in guiding the formation of VBF and in assisting Dr. Linda with her path toward seeking the appropriate treatment for her daughter. Dr. Linda and Hyleri crossed paths again in 2009 and are now working together to assist families affected by a vascular birthmark Hyleri is an established PR and Marketing expert and is currently VBF’s PR and Marketing Executive.

The cost to attend this year’s “Mark of Beauty” gala is $150 per person. Attire is dinner/cocktail. We had a sell-out crowd in 2008 and expect to sell out again this year, so register early. We are not ready to announce our celebrity performers, however, stay tuned for an announcement in the next few months. Corporate sponsorships and rates for tables which include raffle tickets, please go to the link for the “Mark of Beauty” Gala.

Dr. Gregory Levitin will be honored at this year’s Gala as the VBF 2010 Physician of the Year. If you would like to congratulate Dr. Levitin, please click here.

To reserve your spot for either the conference or registration, see the links below.

Note: To register by phone with a credit card, contact Basia Joyce, VBF Ex. Asst. at 518-495-3938. For any questions concerning the conference or gala, please call Basia or email her at BasiaJim99@nycap.rr.com

Register online now

1. VBF "Mark of Beauty" Gala Registration
   
2. VBF Conference/Clinic Registration
   
3. VBF Conference Corporate Sponsorship
   

Mail in Forms

1. VBF "Mark of Beauty" Gala Registration
   
2. VBF Conference/Clinic Registration
   
3. VBF Conference Corporate Sponsorship
   

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VBF Launches 2010 DOA - We need 25 families

Thank you for your support of VBF and the VBF International Day of Awareness.

Many of you have participated every year, since its inception on May 15, 2004. Families and individuals have hosted annual bake sales; garage sales; sold stickers, bears and bracelets; celebrated a birthday by hosting a party for VBF; were featured in newspaper and magazine articles and local television news programs – the list goes on…

There is really no proper way to thank each and every one of you for support, and for raising awareness of vascular birthmarks and the associated syndromes and conditions. VBF has one amazing support network.

As you know, the downturn in the US economy has had an impact on all aspects of life, including charitable giving. Donations to VBF are down 40 percent, while the free services VBF provides to patients and families have continued to increase. For this reason, your continued support of Day of Awareness is more vital than ever.

If you haven’t participated in VBF Day of Awareness, please join the VBF family of tradition and giving by hosting an event in your community: http://www.birthmark.org/awareness

Children with birthmarks have met this challenge by becoming active participants in raising awareness. Saige Cavayero, now in college, serves on the VBF Board and designed and sold bracelets for Day of Awareness. Saige also designed a poster to highlight the 2010 awareness campaign.

Elizabeth Peters sold stickers for a “Wall of Fame”, Gabriella Gomillion donated her own toys to sell and raise funds, Laura and Heather Toulson hosted a lemonade stand, Evan Ducker wrote a book that launched the “Buddy Booby’s Birthmark International Read-Along”, and Owen Dreger hosted a read-along at his school: complete with a play performed by a class at his grandmother’s school.

VBF President and Founder, Dr. Linda Rozell-Shannon, along with VBF Executive Assistant Basia Joyce, VBF Office Manager Lauren Palmateer and VBF Board member Lianne Chase, are organizing the second annual VBF 5K Run/Walk in New York. VBF Board members Danielle Vlahos and Rose Shea will host a walk/run in Boston. VBF Board member and wife of VBF Expert Dr. Stuart Nelson, Peggy Nelson, is hosting a wine tasting event in California along with Peter Zellner and Lauri Firstenberg.

Annual awareness participants include: VBF Board members Brian and Natalie Bolinger, hosts of the Texas Hold ‘Em and Auction; Jan and Andrew Dreger (Owen’s parents) host Campbell’s Boat House for VBF at their family restaurant; Robin Houwman sells pendants to raise funds for VBF and other birthmark organizations.
VBF would also like to acknowledge the support of members like Jill and Paul Brown whose daughter Aslynn underwent surgery for a massive hemangioma, and VBF Honorary Chairs Frank and Barbara Catalanotto whose daughter Morgan had a hemangioma. Like so many parents of children with birthmarks, their efforts on behalf of VBF are outstanding.

It’s never too early to plan your event! Visit the VBF Day of Awareness website today to register your event, or for ideas on how you can help. Here are some helpful links to get you started:

· VBF Day of Awareness website: http://www.birthmark.org/awareness
· Register your event and Shop VBF to order materials, all in one easy step: https://birthmark.org/secure/shopdoa.php
· “Tell Your Story”. Share your experiences with other families: http://www.birthmark.org/awareness/story.php

Remember, May 15 is Day of Awareness, but events can be held any time during the year.

THANK YOU VBF FAMILIES AND FRIENDS!

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VASCULAR BIRTHMARKS FOUNDATION AND
BECKMAN LASER INSTITUTE PRESENT LANDMARK CONFERENCE IN 2009

The 2009 Port Wine Stain and Vascular Birthmarks Conference was VBF’s largest conference ever, with more than 300 attendees from around the world and 25 medical experts. The conference was co-sponsored by Dr. J. Stuart Nelson of the Beckman Laser Institute and VBF, a global foundation dedicated to helping families afflicted with vascular birthmarks, tumors or syndromes.

 

Anne Comi (VBF SWS Expert) and Mike Steffano, Founder of Birthmarks.com	Dr. Nelson is pictured with conference attendees

VBF’s Co-Medical Directors, Dr. Stuart Nelson and Dr. Martin Mihm, both presented ground breaking results from research. Dr. Mihm presented the results of a study concerning the histopathology of hemangiomas that gives promise to developing a drug that will prevent them from growing. Dr. Nelson presented preliminary results of great interest to individuals with port wine stains. The current study results provide hope for a new combination drug and laser therapy treatment that will remove port wine stains.

The day care was full with children with birthmarks. Jennie Legary, VBF Adult Rep and Director of Musicians with Birthmarks read the Buddy Booby Book. VBF Adult Rep, Danielle Vlahos, pictured in the front, coordinates the annual day care center	Children attending the conference were treated to face-painting by a clown

During the conference, other experts presented the latest findings on research, diagnoses, and treatments for vascular birthmarks and related syndromes. In addition to the conference, an informal clinic was held where over 100 appointments were scheduled and conducted by four different birthmark teams.

VBF Co-Medical Director Dr. Martin Mihm, VBF President & Founder Dr. Linda Rozell-Shannon, VBF Co-Medical Director and Conference Co-Sponsor Dr. Stuart Nelson, and VBF's newest board member (West Coast Liaison), Peggy Nelson	Christine Shannon (daughter of founder/president) and Jenny Legary (VBF Board Member and Director of Musicians with Birthmarks) sang for everyone at the Friday welcome reception

The Vascular Birthmarks Foundation celebrated its 15th anniversary at the conference. We continue to raise money all year to actually pay for the hotels and meals for families to attend the conference. VBF is the only birthmark organization that provides free lodging and meals and will also waive all clinic and conference fees to families who request a waiver based on hardship. Your donations to “Sponsor a Family” will continue to help us to be able to pay for families to attend our conference and get a free treatment plan.

VBF also honored Dr. Robert J. Rosen, Co-Director, Division of Peripheral and Endovascular Intervention at the Lenox Hill Heart and Vascular Institute in New York, as its Physician of the Year.

Next year’s conference and our bi-annual gala will be held in NYC on October 8-9, 2010. Dr. Roy Geronemus, of the Laser & Skin Surgery Center of New York will be the 2010 Mark of Beauty Gala and Vascular Birthmarks Conference Chair.

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Bags for Birthmarks

You can help to “Sponsor A Family” so that they can attend the VBF annual medical conference and receive a treatment plan. Donate a new or gently used high-end, vintage, or designer handbag or bid on one at www.birthmark.org. Both ways help! Tell your family, friends, or colleagues that they can help too by donating or bidding on a handbag

To donate a bag, click here, fill out the form, and mail it to us.

To get a bag, click here.

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Port Wine Stains: Clearance, Cure, and Recurrence
To Treat or Not to Treat

The following rebuttal by Dr. Stuart Nelson and Dr. Roy Geronemus was published in the New England Journal of Medicine in response to an article about the recurrence of Port Wine Stains (PWS) after pulsed dye laser treatment. At this year’s conference in Irvine, several physicians spoke about the pathology, progression and treatment of PWS. To summarize what was presented, after a PWS is treated using the pulsed dye laser, the vessels that are targeted by the laser will not necessarily come back, but rather new, deeper vessels will work their way up to the top of the skin thus making “some” stain appear. It is important to understand this because many people believe that PWS will always come back and, therefore, they should not have laser treatment. This is not true. While the laser does not “cure” the PWS, it offers the most hope for clearance, for keeping the skin from thickening and cobbling and for maintaining the best aesthetic outcome for the patient (comment by Linda Rozell-Shannon, President and Founder of the Vascular Birthmarks Foundation, 11/8/07).

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Comments from Dr. Stuart Nelson and Dr. Roy Geronemus:

"We reviewed “Redarkening of Port-Wine Stains 10 Years after Pulsed-Dye-Laser Treatment” by Huikeshoven et al (NEJM 2007;356:1235-1240) with great interest and would offer our comments.

Read more here

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RECRUITING SUBJECTS FOR A RESEARCH STUDY ON FACIAL BIRTHMARKS

The Effect of Facial Hemangiomas on Psycho-Social Development

If you are 14 years old or over and would be willing to answer three short questionnaires, please volunteer for this research study.

This study is investigating the psycho-social impact of growing up with an hemangioma on the face.

You must meet the following criteria to be in the study:

• Your birthmark must have been diagnosed as an hemangioma (either deep, superficial or mixed), NOT a Port-Wine Stain or other type of malformation.
• You did not receive any treatment prior to age 14 to remove, lighten or reduce the Hemangioma.
• It must have covered at least 10% of the face (size of an egg) and been visible to other people.
• You must have attended a public or private school. (not home schooled)
• You must be able to fill out the questionnaire without help from another person.

All participants must sign a consent form, and if you are under 18 years of age a parent or legal guardian must sign and approve your participation in the study.

All information is strictly confidential. Your answers will be sent to the scoring coordinator anonamously (without your identity disclosed).

Elissa Rifkin, M.Ed.
Principal Investigator
studyvb@aol.com

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Interview with our Greek Surgeon Dr Tombris

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