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Expert's Corner
VBF NEEDS LANGUAGE TRANSLATORS
- SPANISH, PORTUGESE, AND ASIAN LANGUAGES Babies with Birthmarks™
Recent Medical Papers and ResearchVBF has a great deal of research available, including
a bibliography for offline research. |
The Vascular Birthmarks Foundation
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Lisa and Greg Fortunoff,
Mark of Beauty Gala Chairs and Sponsors |
Edward Strausman 2008 Conference
Honoree |
We are very excited to announce that the 2008 Vascular Birthmarks Conference will be held in New York City on Saturday, November 15th. This year the conference is one full day only, with a fundraiser the evening before the conference. For the first time in VBF history, we are having the “Mark of Beauty” Gala to jointly benefit VBF and the VBI (Vascular Birthmarks Institute) at Beth Israel. Dr. Milton Waner and Dr. Alex Berenstein are the 2008 Co-Directors of the conference and Lisa and Gregory Fortunoff are the Friday evening Gala Chairs and Event Sponsors. The “Mark of Beauty” Gala will take place at the incredibly beautiful Hudson Theatre located at 145 West 44th Street from 7pm until 10 pm on Friday, November 14th. The conference will take place at the Beth Israel Union Square Auditorium, Phillips Ambulatory Care Center, at10 Union Square East between 14th and 15th Street on November 15th. It will start at 8:30am, with day care drop off and conference registration/check-in starting at 7:30am.
There are three ways to register: online, by mail, or by phone. To register online, use our links. You can also download the registration form and send a check or money order with your $50 registration fee for each conference and/or clinic as soon as possible to VBF, PO Box 106, Latham, NY 12110. Registrations will be taken over the phone only if you are requesting to have all fees except the $25 non-refundable fee waived. For those who need to cancel, all fees will be returned minus the $25 non-refundable fee if you cancel on or before October 14, 2008. To register by phone, contact Paige Salvador, VBF Executive Director, at 856-234-2126. If you have questions, you can email them to Paige at BASPASTS@cs.com or call her at the number indicated. Thank you.
Buddy
Booby says, “Come in and see what’s new”.
Welcome to VBF 2008 International Day of Awareness: http://birthmark.org/awareness/
Look what’s new, VBF 2008 International Day of Awareness! We are
excited to launch our international campaign for awareness on May 15.
It’s the same day with a new look. Explore the new website and join
in the fun.
It’s
official! Linda Rozell-Shannon, President and Founder of VBF is now Dr.
Linda. She has recently completed her PhD studies in Education.
Her dissertation “Assessing the Impact of Hemangiomas on Maternal
Stress” suggests a strong relationship between acute stress and
the diagnosis of the hemangioma. The data from this study will hopefully
provide support for families who must appeal insurance denial of treatment
of a hemangioma. The study results can be viewed
by going to this link. (pdf)
Dr. Linda will be presenting her dissertation findings in a poster presentation
at the International Society of Surgeons of Vascular Anomalies (ISSVA)
conference in Boston in June. It will be Dr. Linda’s first presentation
since earning her PhD.
Kelsey Mueller is a beautiful 17 year old who has had many obstacles to overcome in her life. She was born weighing 7lbs 15oz and had a very large hemangioma which was present at birth. Initially, her birthmark appeared to be a port wine stain, very deep purple in color and covered her left arm completely from fingertips to chest, neck and shoulder. Kelsey was not eating much after birth and went home 2 days later weighing 6lbs.
Linda
Rozell-Shannon, President and Founder of the Vascular Birthmarks Foundation
(VBF), was honored on The Montel Williams Show (MONTEL) as one of five
finalists of the 2007 Voices campaign. Voices--One voice can lead to a
chorus for change® is an annual campaign that honors women across
America for their passion, leadership and achievements as everyday women
who raise their voice to create positive change. The campaign is sponsored
by Charming Shoppes, the parent company of Lane Bryant, Fashion Bug, Catherines
and Petite Sophisticate.
See what our friends and viewers had to say
See more photos of VBF President with
MONTEL
You
can help VBF raise $5,000
Alejandro Berenstein, M.D., was named this year’s recipient of the VBF Physician of the Year award for his outstanding and innovative techniques in treating massive, complicated, and often life-threatening vascular malformations and hemangiomas.
Read More about Dr. Berenstein
The Birthmark and Vascular Anomalies Center at Children’s Hospital of Wisconsin has created an interdisciplinary task force to study infants with vascular disorders and low platelets.
People with SWS who have and have not taken low-dose aspirin are invited to participate in a research survey.
Principal Investigator: Eric Kossoff, MD
You are invited to join a study enrolling children ages 2-18, with proven Sturge-Weber syndrome on an MRI, for a study of the Hopkins modified Atkins diet for treating intractable seizures. Children must have at least one seizure every month and have tried at least 2 anticonvulsant medications to enroll. The study involves 3 visits to Johns Hopkins over 6 months, which must be covered by the parent or insurance. Blood and urine studies will be obtained at the first and last visits.
For more information, contact Dr. Eric Kossoff at 410-614-6054 or ekossoff@jhmi.edu
A study is being done at UCSF on the genetic cause of PHACES syndrome. Please contact Dr. Dawn Siegel directly to discuss your participation in the study. (As of June 1, 2007 this study is on hold because Dr. Siegel is relocating.The study will be moving to OHSU in Portland, Oregon and should be reactivated by September 1, 2007.)
Elissa Uretsky- Rifkin, M.Ed. CMHC is conducting this survey for Hemangioma
ONLY.
This study has been approved by the Human Studies Committee at The Washington
University Medical Center in St. Louis, MO. 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.
From
Children's Hospital Boston: On January 14, 2007 Dr. Judah Folkman passed
away suddenly at the age of 74. Dr. Folkman was the founder and director
of the Vascular Biology Program at Children's Hospital of Boston. He was
a true visionary and scientific pioneer.
Vascular
Birthmarks Foundation is partnering with Recycling for Charities, a non-profit
organization aimed at reducing electronic waste. By donating your old
cell phones, pagers, and other electronic devices you have the unique
opportunity to help keep the environment clean and support VBF at the
same time!
Please click here to learn more about this exciting program.
The
Republic of Armenia is a small ancient country in the Southern Caucasus
with a population of about one million children. The majority of the children
with Hemangiomas and other Vascular Neoplasms are treated in Pediatric
Oncology Department (POD), which is assisted by NGO “Friends of
Children with Cancer”.
This year’s conference was another successful event for VBF. Nearly 175 people attended the weekend long event. A special thanks to the Beckman Laser Institute, Beckman Laser Institute, Inc., Patricia Beckman, Dr. Michael W. Berns, Dr. Bruce Tromberg, the Laser Microbeam and Medical Program, and the Cynosure Corporation for funding and sponsoring the event. Without Dr. Stuart Nelson, his volunteer staff at the BLI, and the VBF team, and other other volunteers, this conference would not have happened, so we must also thank all of them as well.
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Terrance before his surgeries.
He could not keep his tongue in his mouth. |
Terrance, pictured in the
center with Dr. Michael Cunningham (left) and Dr. David Lawlor (right)
after his last surgery in the summer of 2007. Terrance can now keep
his tongue in his mouth, and he can eat, speak, and blow bubbles!!!! |
Approximately
70 guests attended the function, and we were fortunate to raise just over
$500 AUS from their amazing generosity through the sale of tickets, merchandise
and raffle. The night was an amazing one. The music was playing and guests
were dancing up until the wee early hours of the morning. Guests are still
commenting on what a great night it turned out to be, and how much fun
they had. Not only that the response and reviews about the foundation
that I am still receiving up until this moment is truly overwhelming and
just goes to show how important it is for such an organization to exist
not only in Australia but internationally as well.
Amas Musical Theatre,
Donna Trinkoff/Producing Artistic Director
in association with Terry Schnuck
presents the world premiere of the musical
For more info please visit here
VBF NEEDS LANGUAGE TRANSLATORS - SPANISH, PORTUGESE, AND ASIAN LANGUAGES
The Catalanottos are VBFs Honorary
Chairs. 
(From left to right) Brian, Natalie and their daughter Coco Bolinger (VBFs
largest DOA event hosts and fellow Texans), Frank, Barbara and their daughter
Morgan, VBF President and Founder Linda Rozell-Shannon, and Dr. Stuart
Nelson, VBF's Medical Director attend June 23rd home game against Houston
and receive donation from the Catalanottos and the Texas Rangers.
Natalie and Brian Bolinger have continued to uphold the “everything is bigger in Texas” slogan. This year the Bolinger’s broke all VBF fund raising records. Their 4th Annual North Texas Benefit netted nearly $34,000 for VBF.
Coco before and after surgery
On May 20th the
third Meeting of People with Hemangioma and Linphangioma was held in Brazil.
The conference was organized by ABRAPHEL, a Brazilian association for
people with Hemangioma and Lynphangioma, and took place in the Hospital
A.C. Camargo, in Sao Paulo.
JOIN
THE BUDDY BOOBY READATHON NOW VBF International Day Of Awareness
Read-a-long
On May 15, 2008, in a global effort to increase public education &
raise birthmark awareness--classrooms all over the world will be reading
the children’s book, Buddy Booby’s Birthmark*
The Stephen
Dale Project
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VBF President Linda Rozell-Shannon meets First Lady Laura Bush, October 2006, in Saratoga, NY. |
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Michael's
Website Michael Politzer, 13, was born with a severe form of Klippel-Trenaunay (KT) Syndrome, a rare vascular disease that in his case affects virtually every body system from the ribcage down. He's been hospitalized 50 times and undergone more than 30 surgeries, but this little guy's ready to take on the world.
Get a customized Birthmark Buddy Bear from Michael
For
many years, families seeking to adopt an orphan with a birthmark have
contacted VBF to find out if the birthmark was life threatening, would
require many treatments, would cause problems for the orphan or would
be easily treated. VBF would forward the inquiry and photos to one of
our expert physicians. I realized one day that there was a need for
an organized effort to match orphans with birthmarks with families in
the United States who would be willing to adopt an orphan with a birthmark.
Get
Your School Involved Today
Join Glen's Gang - Kids with Birthmarks can now share stories and read about other kids with birthmarks by joining Glen's Gang
Read More Here about VBF's Kids Who Care Program
The Sturge-Weber Syndrome Canada
A Worldwide Educational Outreach Program
Physicians
and professionals worldwide are encouraged to submit these guidelines
to any organization that would be related to primary pediatric health
care. Please contact me directly if you are submitting these guidelines
to any organization so that we can track the success of the program.
For more information on Babies With Birthmarks, or to find out how you
can help us to get these guidelines to be used all over the world, please
click here.
HAVE WE HELPED YOU?
Meet Buddy Booby, VBF's Officical Mascot
| Mothers'
Day is May 11th Order flowers ... VBF receives 12% from each order  Help support VBF by purchasing your flowers from Flowerpetal.com. |
 |
| Beauty
Comes From Within |
| Purchase a Buddy Booby
Book….$15.99 softcover and $21.99 hardcover |
| Birthmark
Book FREE with $24.95 donation! |
|
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| Purchase
Videos from Previous Conferences Order online or by mail  |
| Use goodsearch…. VBF gets one penny per search |
 Go GREEN and Support VBF! Vascular Birthmarks Foundation is partnering with Recycling for Charities, a non-profit organization aimed at reducing electronic waste. By donating your old cell phones, pagers, and other electronic devices you have the unique opportunity to help keep the environment clean and support VBF at the same time! Please click here to learn more about this exciting program and remember to designate VBF as your charity of choice. |
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!
CBS
Early Show
VBF Gets Referenced in Buddy Booby Birthmark Articles
CBS
Early Show
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: 212-636-3974
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
VBF
VBF Europe
VBF Latin American
VBF New Zealand
VBF Australia
VBF India
VBF Africa
VBF Asia
Sturge-Weber Syndrome Community
SWSC-Canada
Partners
Anomalie Vasculaire Site for French speakers worldwide, and friend of VBF that offers support and information about vascular birthmarks
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
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.
VBF is proud to announce that Dr. Waner, the leading birthmark surgeon and treatment specialist will be answering emails regarding birthmark treatment.
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. 
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! 
VBF
is proud to have the world renown expert, Dr. Alex Berenstein as its expert
in AMVs. Send your questions concerning AVMs to him. 
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.
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. 
VBF
is proud to announce the addition of an expert who treats Lymphatic Malformations.
Ask Dr. Edmonds your questions related to this vascular lesion. 
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. 
Dr.
Aaron Fay joins VBF as our eye specialist VBF's Eye Specialist will answer
questions concerning eye problems and birthmarks.
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. 
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. 
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.
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. 
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. 
VBF is proud to add Dr. Tombris as a European surgeon expert. He treats all forms of hemangomas, port wine stains and malformations.
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. 
VBF
is proud to welcome Dr. Delfanian as our Klippel-Trenaunay expert. Send
your questions concerning KT Syndrome to Dr. Delfanian. 
VBF is proud to welcome Dr. Denise Metry as our PHACES expert. If you have any questions regarding this syndrome, please ask Dr. Metry. 
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. 
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.
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. 
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). 
VBF
Announces "Ask Dr. Linda." Dr. Linda Rozell-Shannon is the leading
lay expert in the world on the subject of vascular birthmarks.
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. 
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.
VBF is proud to have Corinne Barinaga, our Administrative Director, to answer emails concerning family advocacy or treatment issues. 
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 
Leslie
is a trained developmental specialist. Send questions concerning port wine
stains and this topic to leslie 
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.
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. 
Our
newest program - 
