Expert's Corner
Ask The Vascular Birthmark Expert
VBF is proud to announce that Dr. Waner, the leading birthmark surgeon and treatment specialist will be answering emails regarding birthmark treatment. |
Ask the PWS Expert
VBF welcomes Dr. Stuart Nelson of the Beckman Laser Institute as another
one of our medical experts. Dr. Nelson will answer your questions concerning
the diagnosis and treatment of Port Wine Stains. |
Ask the Surgeon
Meet
Dr. Gregory Levitin, partner to Dr. Milton Waner. Dr. Levitin will answer
your questions regarding the surgical treatment of all vascular birthmarks
and tumors. VBF's Ask the Surgeon! |
Ask the AVM
Expert
VBF
is proud to have the world renown expert, Dr. Alex Berenstein as its expert
in AMVs. Send your questions concerning AVMs to him. |
Ask the Wound Care
Expert
VBF
is proud to add Dr. Thomas Serena as our wound care expert. Please send
Dr. Serena your questions regarding wound care for an ulcerated hemangioma
or other vascular birthmark, tumor, or syndrome that requires wound care.
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Ask the KTS Surgery Expert VBF is proud to welcome Dr. Giangola of NYC as our KTS surgical expert. If you have questions concerning the surgical treatment of KTS or other vascular lesions of the arms, legs, or trunk, contact him. |
Ask the Lymphatic Malformation
Expert VBF
is proud to announce the addition of an expert who treats Lymphatic Malformations.
Ask Dr. Edmonds your questions related to this vascular lesion. |
Ask the Military Surgeon VBF is proud to welcome Dr. Steve Thompson as our Military surgeon to answer questions about vascular birthmarks to our military families. He is currently working with Dr. Waner in NYC. |
Ask the Eye Specialist
Dr.
Aaron Fay joins VBF as our eye specialist VBF's Eye Specialist will answer
questions concerning eye problems and birthmarks. |
Ask the Research Expert
VBF
is proud to showcase Dr. Martin Mihm, Jr. as our Research Expert. Dr. Mihm
is coordinating and directing research regarding vascular birthmarks and
tumors. |
Ask the AVM and Extremities
Expert VBF
Welcomes Dr. Bob Rosen as our expert for all non-brain AVMs and vascular
lesions of the arms and legs. Dr. Rosen welcomes your questions concerning
these lesions. |
Ask the Internal Lesions
Expert
VBF
is proud is welcome Dr. Steven Fishman of Boston Children's Hospital as
our Ask the Internal Lesions Expert. Ask Dr. Fishman your questions about
liver and other internal vascular lesions. |
Ask the Doctor in Spanish, Portugese, or Italian
VBF
is excited to have a multilingual expert. Dr. Piris is from Boston and can
answer your questions in Spanish, Portugese, and Italian and of course English.
Please send your questions concerning your vascular birthmark or tumor to
Dr. Piris. |
Ask the Interventional
Radiologist VBF
is proud to add Dr. Orhan Konez as our expert Interventional Radiologist.
Questions regarding reading and interpreting films and treating malformations
with sclerotherapy or embollization can be sent to Dr. Orhan Konez. |
Ask the European Surgeon VBF is proud to add Dr. Tombris as a European surgeon expert. He treats all forms of hemangomas, port wine stains and malformations.
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Ask the SWS Expert
VBF
is proud to announce that Dr. Anne Comi, one of the leading experts on Sturge
Weber Syndrome will be responding to your questions concerning this syndrome.
Read more about Dr. Comi and ask her expert advice on SWS. |
Ask the KT Expert
VBF
is proud to welcome Dr. Delfanian as our Klippel-Trenaunay expert. Send
your questions concerning KT Syndrome to Dr. Delfanian. |
Ask the PHACES Expert
VBF is proud to welcome Dr. Denise Metry as our PHACES expert. If you have any questions regarding this syndrome, please ask Dr. Metry. |
Ask the Laser Doctor
VBF
is proud to offer to our families a new service. VBF's Ask the Laser Doctor
offers expert advice on laser treatments for all vascular birthmarks by
Dr. Susie Astner. |
Ask the Doctor's Expert
VBF
is proud to announce that Dr. Edwin F. Williams III will be answering emails
from physiciansregarding the diagnosis and treatment of individuals with
a vascular birthmark.
This form is intended for physicians ONLY. Parents who need assistance should
ask an expert. Only physicians will receive a reply. |
Ask the Pharmacy Doc
VBF
is proud to offer the services of a Pharmacy Doc who worked for many years
at a Vascular Birthmarks Clinic. If you or your child has a vascular birthmark
and you have a question regarding a prescription drug, please ask Doc Helen
Figge. |
Ask the Airway Expert
VBF
is proud to announce that Dr. Jason Mouzakes from Upstate New York has joined
us as our airway expert. Email Dr. Mouzakes with questions regarding airway
hemangiomas and other vascular lesions in the airway (throat area). |
Ask
Dr. Linda, VBF's President and Founder
VBF
Announces "Ask Dr. Linda." Dr. Linda Rozell-Shannon is the leading
lay expert in the world on the subject of vascular birthmarks. |
Ask the CMTC Expert
VBF is proud to have Lex van der Heijden, Chairman, CMTC, as our Cutis Marmorata Telangiectatica Congentica expert. If you or your child has CMTC, please contact Lex with your questions. |
Ask the CMTC Doctor
VBF is proud to announce the addition of Dr. Marilyn Liang of Boston Children's Hospital as our Ask the CMTC expert. Send your questions regarding CMTC to Dr. Liang |
Ask the Insurance Appeal Expert
VBF is proud to add Barbara (Basia) Joyce as our insurance appeal expert. Please send your questions regarding your appeal or request for out-of-network treatment to Basia. |
Ask the Family Services Expert
VBF is proud to have Corinne Barinaga, our Administrative Director, to answer emails concerning family advocacy or treatment issues. |
Ask the Developmental Specialist
Elissa
Uretsky- Rifkin, M.Ed. CMHC is a trained developmental specialist and is
on the board of VBF. Send questions concerning hemangiomas and this topic
to Elissa |
Ask the Developmental Specialist
Leslie
is a trained developmental specialist. Send questions concerning port wine
stains and this topic to leslie |
Ask the Adult Rep in Spanish VBF is proud to add Alicia as our Adult with an AVM who can translate your spanish questions to one of our docs and can answer back to you in spanish.
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Ask the Makeup Expert
VBF
is happy to provide you with an expert opinion regarding the use of make-up
to cover a birthmark. Ask our expert Nancy Roberts, Co-Creator of Smart
Cover Cosmetics (www.smartcover.com), your questions about make-up. |
Contact the Oral and Dental Experts
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| Physician to Physician
Case Study Forum created by Dr. Orhan Konez |
VBF NEEDS LANGUAGE TRANSLATORS
- SPANISH, PORTUGESE, AND ASIAN LANGUAGES
Babies with Birthmarks™
Our
newest program - guidelines for physicians
to follow to diagnose and treat vascular birthmarks with the earliest intervention.
Recent Medical Papers and Research
VBF has a great deal of research available, including
a bibliography for offline research.
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MacKenzi XiaFang's Story
Update!
MacKenzi is here with her new family!

My Husband and I have 3 biological sons, but felt that our family
was not complete. Since my husband and I both have adopted siblings,
adoption was always something we considered. In 1998 we decided
to begin the process of adopting. After a lot of research and consideration
we decided to adopt our daughter from China. After a 9-month “paper
chase”, we traveled to China in August of 1999 to bring our
daughter home. We knew from the beginning that she was meant to
be part of our family.
After
our first adoption experience, we talked about adopting again; this
thought was always in the back of our minds. In May of 2004 I had
an overwhelming feeling, that I can't explain, to go to a website
that I had visited many other times. This website lists international
"waiting children." When I opened the website I saw a
small picture of a little girl, so I enlarged the picture so I could
really see her. When I saw her eyes, I felt an instant connection
to her and felt that she was my daughter. She had a hemangioma on
the bridge of her nose and over one eye. I called my husband and
asked him to look at the picture and he said, "she's a cutie",
and he also knew that this was his daughter. About a week later
I said to my husband "should I call the agency and see about
the little girl?" His response was an overwhelming "yes"(he
always wanted to adopt again). I called the agency but found out
that some other families were considering adopting the little girl.
Even so, my husband and I began researching hemangiomas to find
out all we could about them. Neither of us had any previous knowledge
about them, but we quickly educated ourselves. While researching
hemangiomas, I ran across a website about a foundation that Linda
Shannon started called the Vascular Birthmark Foundation. About
a week later I called back to the agency to see if anyone had made
a decision about the little girl. The lady at the agency told me
that she thought this child would be easy to adopt. However, all
the other families had turned her down. The prospective families
had received a wide variety of medical opinions from possible brain
damage to vision problems to her requiring major cosmetic surgery.
The adoption agency said that they were going to have to send her
back through the system, but offered to let me consider another
child. I explained that my husband and I were not actively seeking
an adoption at this time. Although, we felt a connection to THIS
little girl and knew that God had presented this to us. We knew
that if it were meant to be she would be our daughter. The lady
at the agency didn't want to send me the video because she said
"I know you are going to call me in a couple of days and say
no." After some pleading and begging she agreed to overnight
the video and pictures to me. In the meantime, I started calling
for appointments to get some medical advice. Several doctors turned
me down in my area. They didn't want to try and make a judgment
based on a video or picture. Then I remembered Linda Shannon's website
and found a link to doctors on this site. One of the doctors on
her list who specializes in vascular birthmarks had an office about
5 miles from our house. I called and they were happy to see us.
When the video came the next day I was about to show it to a friend
when my phone rang. On the phone was the lady from the agency. She
said she had received a call from Linda Shannon who had been contacted
by a family with the picture of the little girl (they wanted to
be assured that the girl was being adopted). Linda then showed the
picture to the top doctor in the US who specializes in this area,
Dr. Milton Waner. His comment, she told me was that this little
girl was going to fine. He thought she would probably need a couple
of laser treatments to help fade the birthmark. The lady at the
agency was so excited to give me this news.
The next week we visited with two doctors. One of the doctors was
Dr. Buckingham; we discovered that he had worked with Dr. Waner
in regards to vascular birthmarks. He totally agreed with Dr. Waner
as did the other doctor we visited with, that she would probably
need 2-3 laser treatments. We then called the agency and told them
we wanted to move forward with the adoption. In the midst of all
of this I was put in contact with Linda Shannon. We became instant
friends and began communicating by e-mail. One night she asked me
to call her, she was very excited. She had decided that she wanted
to start a foundation to help children with birthmarks find families.
I was thrilled about the prospects of this. I wanted to help her
in anyway that I could. My heart aches for every child that needs
a family. Now, I am working with Linda as part of Orphans with Birthmarks.
We hope through this to help every child with a birthmark find a
forever family.
Our
family is hoping to travel at the beginning of December 2004 to
bring our daughter home. Her new name will be MacKenzi XiaFang.
In China there is an Ancient Chinese belief that "An invisible
red thread connects those who are destined to meet, regardless of
time, place or circumstance. The thread may stretch or tangle, but
never break." We believe as a family that God had a plan for
our lives and part of his plan was for us to adopt our two daughters.
They were meant to be part of our family from the beginning. We
have a "red thread" connection with both of our daughters,
even before we knew who they were.
Rhonda & John Steczkowski
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Meet Buddy Booby, VBF's Officical Mascot

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Don't Forget!
Every Day is a Day of Awareness for VBF!
Visit the VBF International Day of Awareness Website:
birthmark.org/awareness
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VBF NEEDS LANGUAGE TRANSLATORS - SPANISH, PORTUGESE,
AND ASIAN LANGUAGES
If you can volunteer your time to translate VBF's key informational pages into
one of the above mentioned languages, or in any other language not indicated,
contact VBF President and Founder Linda Rozell-Shannon at hvbf@aol.com.
There are approximately 24 key pages. Please put "Language Translation"
in the subject line. This is very important for our families all over the world
to be able to have the highest quality of information and to have it in their
own language. We can make a difference, but we need your help to continue to
help families all over the world that are affected by vascular birthmarks.
How to
Appeal an Insurance Denial or
Request Out-of-Network Treatment (pdf)
Please
join the VBF and Texas Rangers outfielder Frank Catalanotto and his wife Barbara
as we team up to strike out vascular birthmarks!
Donna and Evan Ducker and Buddy Booby Make it Big...
CBS
Early Show
VBF Gets Referenced in Buddy Booby Birthmark Articles
CBS
Early Show
Information for Parents
If you think your child has a hemangioma Click
Here...

If you think you or your child has a port wine stain Click
Here...

If you think you or your child has a venous malformation Click
Here...
Information on syndromes
associated with vascular birthmarks

Multifocal Lymphangioendotheliomatosis with Thrombocytopenia
Read
about Jadyn's Journey with this rare vascular syndrome
Multifocal
Lymphangioendotheliomatosis With Thrombocytopenia
A Newly Recognized Clinicopathological Entity
Article Located at Archives of Dermatology
Multifocal
Lymphangioendotheliomatosis With Thrombocytopenia:
A Rare Cause of Gastrointestinal Bleeding in the Newborn Period
Article Located at Pediatrics
Please Note:
Dr. Waner's Office Has Moved To:
Vascular and Birthmark Institute of New York
126 West 60th Street
New York, NY 10023
Contact Clinical Coordinator directly at:
Corey R. Tournay, R.N., Clinical Coordinator
Vascular Birthmark Institute of New York
126 West 60th Street, Ground Floor
New York, NY 10023
Tel: 212-636-3977
Fax: 212-636-3979
CTournay@chpnet.org
If you have an appointment or are trying to make an appointment please make
sure you know that he is now at a new location but still in Manhattan.
VBF is Making a Difference

What Our Families Are Saying




75 Minute Miracle - Anna before and after surgery done by Dr. Waner in 75 minutes
Participate in our Annual Day of Awareness
Pariticpate in our
Annual Book Reading of Buddy's Booby Birthmark Book
Participate in our Kids Who Care Program
Participate in Glens Gang newsletter for kids with
birthmarks
See Dr. Waner in Europe
If you are a patient of Dr. Waner's, we are in need of before and after photos.
Click here.
YOU CAN HELP - PARTICIPATE IN VARIOUS VASCULAR
BIRTHMARKS STUDIES
Research Studies
New! Our list of research studies for vascular birthmark
related research.
Low-Dose Aspirin Study for people with SWS
NEW PHACES Study
PWS Study
Use of the Atkins diet for children with Sturge-Weber
Syndrome
PHACE Syndrome Registry. Parents of children
with PHACE Syndrome registry
The Effect of Facial Hemangiomas on Psycho-Social
Development
Publications for Parents
Find helpful documents for families
MAKE UP FOR BIRTHMARK COVERING
Nancy Roberts of www.smartcover.com will send anyone who wants to cover
a birthmark a gift certificate. Write directly to our Ask
the Make-up Expert on our experts corner and receive a free gift certificate
for $15.00 towards the purchase of any Smart Cover make up product.
 
Read Kay's Story (VBF Europe Rep)
Kay before SmartCover and Kay after SmartCover
Make-up by Stacey Craven
Aesthetician/Makeup Artist
Do you have any suggestions to improve the services we offer to our VBF families?
Send us your comments and suggestions!
Linda Rozell-Shannon and
her daughter Christine- The Founder of VBF Tells Her Personal Story
Meet the Webmistress
Missy Scott
Missy has worked with VBF for seven years and is responsible for all technical
and design issues of this site. If you have a question or concern about VBF's
website, please contact her.
Nevus Clinic (Non-Vascular Birthmarks) Starts at Mass. General Hospital
Dr. Martin Mihm and his team will be seeing patients with congenital nevus (giant
hairy, moles, pigmented lesions, etc.) and all other non-vascular birthmarks
(Mongolian spots, Spitz Nevus, etc.) in addition to Vascular Birthmarks, at
the Saturday clinics at the Mass. General Hospital in Boston. Dr. Mihm is combining
the Vascular Birthmarks Clinic with the Congenital Nevus clinic to form the
first combined vascular and non-vascular birthmarks clinic. Linda Shannon will
be the clinic coordinator at these combined clinics. This clinic is for adults
and children. To schedule an appointment, call Andrea at 617-724-1350.
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