Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
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1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary GalaFriday, October 10, 2014 in New York City

VBF 2014 Annual ConferenceSaturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products
 

Ask the VBF Experts

Dr. Stuart Nelson, VBF Co-Medical Director and International Port Wine Stain Laser Specialist
Dr. Nelson will answer your questions concerning the diagnosis and treatment of Port Wine Stains.

 

Dr. Gregory Levitin, Hemangioma and Malformations Surgeon, NYC and LA
Dr. Levitin will answer your questions regarding the surgical treatment of all vascular birthmarks and tumors.

 

Dr. Robert Rosen, Vascular Lesions of Arms and Legs Interventional Radiologist
Our expert for all non-brain AVMs and vascular lesions of the arms and legs, Dr. Rosen welcomes your questions.

 

Dr. Roy Geronemus, NYC and International Laser Specialist
If you have a question or concern about laser treatments in general, contact Dr. Geronemus.

 

Dr. Aaron Fay, Hemangioma and Malformation Eye Surgeon
Dr. Fay will answer your questions about orbital birthmarks.

 

Corinne Barinaga, VBF Family Services Director
Corinne Barinaga, our Administrative Director, will answer emails concerning family advocacy, treatment questions, or physician referral.

 

Dr. Martin Mihm, VBF Co-Medical Director and Research Director
Dr. Mihm is coordinating and directing research regarding vascular birthmarks and tumors.

 

Dr. Darren Orbach, Pediatric Neurointerventionalist for AVMs and PHACE
VBF is proud to welcome Dr. Orbach!

 

Dr. Anne Comi, Sturge Weber Syndrome Specialist
One of the leading experts on Sturge Weber Syndrome, Dr. Comi will be responding to your questions concerning this syndrome.

 

Dr. Alex Berenstein, Malformations and AVM Interventional Radiologist
Ask Dr. Berenstein your questions regarding interventional radiology.

 

Dr. Kami Delfanian, KTS Treatment Specialist
Send your questions concerning KT Syndrome to Dr. Delfanian.

 

Dr. Barry Zide, NYC Hemangioma and Malformations Surgeon
If you have a question or concern about hemangioma and vascular malformation treatment in general, contact Dr. Zide.

 

Basia Joyce, VBF Insurance Appeals Specialist
Please send your questions regarding your appeal or request for out-of-network treatment to Basia.

 

Dr. Joseph Edmonds, Lymphatic Malformations Surgeon
Ask Dr. Edmonds your questions related to Lymphatic Malformations.

 

Anna Duarte, M.D., Florida Expert
Ask our expert Dr. Duarte, your questions about receiving treatment in Florida.

 

Dr. Orhan Konez, Interventional Radiologist
Questions regarding reading and interpreting films and treating malformations with sclerotherapy or embollization can be sent to Dr. Orhan Konez.

 

Dr. Milton Waner, Hemangioma and Malformations Surgeon
Email Dr. Waner with questions regarding hemangiomas and other vascular lesions.

 

Dr. Steven Fishman, Internal Lesions Surgeon
Ask Dr. Fishman your questions about liver and other internal vascular lesions.

 

Dr. Calil, Lymphatic Malformation Surgeon
Dr. Calil will answer your questions about Lymphatic Malformations.

 

Elissa-Uretsky Rifkin, M.Ed. CMHC Midwest Developmental Specialist
A trained developmental specialist and is on the board of VBF. Send questions concerning hemangiomas and this topic to Elissa.

 

Dr. Stavros Tombris, European Surgeon
Fr. Tombris treats all forms of hemangomas, port wine stains and malformations.

 

Dr. Stevan Thompson, Military (Tricare) Surgeon
Dr. Stevan Thompson has joined us to answer questions concerning the treatment of vascular birthmarks in the military.

 

Dr. Helen Figge, Pharmacist
If you or your child has a vascular birthmark and you have a question regarding a prescription drug, please ask Doc Helen Figge.

 

Dr. Linda Rozell-Shannon, VBF President and Founder
Dr. Linda Rozell-Shannon is the leading lay expert in the world on the subject of vascular birthmarks.

 

Lex Van der Heijden, CMTC Foundation
If you or your child has CMTC, please contact Lex with your questions.

 

Leslie Graff, East Coast Developmental Specialist
Leslie is a trained developmental specialist. Send questions concerning port wine stains and this topic to Leslie.

 

Linda Seidel - Make-up Expert
Ask Linda Seidel your questions about make-up.

 

Nancy Roberts - Make-up Specialist
Ask our expert Nancy Roberts, Co-Creator of Smart Cover Cosmetics (www.smartcover.com), your questions about make-up.

 

Eileen O'Connor, Adult Living with PWS

 

Laurie Moore, Make Up Expert from Colortration
Laurie Moore, from www.colortration.com will answer makeup related concerns.

 

Alicita, Spanish Expert
Ask our expert Alicita, your questions in Spanish.

 

Dr. Thomas Serena, Wound Care Expert

 

Sarina Patel, Young Adult Advocate

 




 

What Our Families Are Saying About Us

 

"We relied on the Vascular Birthmarks Foundation to provide us with the information, the contacts, the resources, and the support that we needed to get through this difficult time. Their theme, "We are making a difference" couldn't be more accurate. For us, it was all the difference in the world."
Jill Brown

 


Hi Linda
Just a note to say how wonderful I found the interview of you and Capital 9 news. Thanks so much for your devotion.
Gina

 




PHACES Study


Columbia University Medical Center

PHACES Study

Beginning June 1, 2007, we will initiate a transcranial Doppler imaging study of children with PHACES syndrome (OMIM #606519) at the Morgan Stanley Children’s Hospital of New York, Columbia University Medical Center.

The PHACES acronym refers to malformations of the posterior fossa, facial infantile hemangiomas, arterial cerebral vascular anomalies, cardiovascular anomalies, abnormalities of the eye, and sternal clefting or supraumbilical raphe. Unlike Sturge Weber syndrome, PHACES patients have infantile hemangiomas rather than capillary malformations (port-wine stains). The hemangioma may or may not affect the facial segment that corresponds to the first trigeminal division, ‘V1’. The neurologic features of PHACES can be divided into two general categories: congenital anomalies which include structural malformation of the cerebral vasculature, cerebellum, and cerebrum and progressive stenoses (obstructions) and occlusions (closures) of the principal cerebral arteries. A subset of PHACES patients develops a moyamoya-like syndrome and/or arterial ischemic strokes.

Transcranial Doppler imaging (TCDI) is a safe, inexpensive, and effective means of identifying congenital cerebral vascular anomalies and detecting progressive, steno-occlusive arterial changes. We intend to perform a prospective clinical study evaluating PHACES patients by TCDI and carotid duplex ultrasonography.

Those of you who regularly manage PHACES patients realize the difficulty involved in screening for progressive vascular changes by MR angiography and the potential harm associated with sedation. This research should help to determine adequate screening intervals with an imaging technique that does not require sedation or contrast and can be performed in the office as the child lies comfortably in a parent’s lap. Much as conventional transcranial Doppler helps to stratify risk of stroke in children with sickle cell disease, we expect that TCDI will have similar utility in the screening and management of PHACES patients.

Please help us to recruit study subjects. We will evaluate children of any age. However, formal study requires serial TCDI in children without history of prior stroke, four months of age or younger. All patients must undergo a standard evaluation for PHACES syndrome including brain MRI with angiography and echocardiography prior to (or during) study enrollment. Study participation is free of charge. Unfortunately, we are not able to defray travel or parking expenses for families at this time.

We will not assume a role in, or intervene with, the clinical management of patients referred for study unless specifically requested at the time of referral. Results of each TCDI evaluation, particularly those suggestive of progressive vasculopathy, will be conveyed immediately to the referring physician.

This study has been approved by the Internal Review Board at Columbia University Medical Center. Please contact Dr. Heyer directly with study questions or referrals at (212) 342-2900 or by e-mail (gheyer@neuro.columbia.edu). If you are unsure whether a patient meets diagnostic criteria for PHACES syndrome, we will be happy to discuss the case. Enrollment begins June 1, 2007.