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:
No one knows why vascular birthmarks occur, but treatment guidelines
are changing.
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
See how our Chapter celebrated VBF Day of
Awareness last year!
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
- VBF "Mark of Beauty" Gala Registration
- VBF Conference/Clinic Registration
- VBF Conference Corporate Sponsorship
Mail in Forms
- VBF "Mark of Beauty" Gala Registration
- VBF Conference/Clinic Registration
- VBF Conference Corporate Sponsorship
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!
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.
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.
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).
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
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
Interview with our Greek Surgeon Dr Tombris