Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
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1994 - 2015
Celebrating 21 years with
80,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder
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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. Milton Waner, Hemangioma and Malformations Surgeon
Email Dr. Waner with questions regarding hemangiomas and other vascular lesions.


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.


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


Rafael Ortiz, MD, Neuro-endovascular Surgeon
Ask Dr. Ortiz your questions about vascular tumors of the head and neck region, cerebral and spinal arteriovenous malformations, treatment of craniofacial vascular lesions (venous, lymphatic, AVMs, hemangiomas) in adults and children.


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 (, your questions about make-up.


Eileen O'Connor, Adult Living with PWS


Laurie Moore, Make Up Expert from Colortration
Laurie Moore, from 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.


Dr. Linda Answers Questions Regarding PWS/SWS Gene Mutation Breakthrough

From Dr. Linda:


1) questions about "what does this mean in plain language"


Many of you have asked me what this new breakthrough with finding a mutated gene that caused a PWS or Sturge Weber means. In plain language, what this means is that 1) Moms or Dads did nothing to cause this 2) There was a mutation in a gene that caused this 3) Now we can work toward a treatment that will "repair" the mutation and resolve the stain but this would ONLY occur after an accurate diagnosis is made and that can only be done once the baby is born. Gene therapies are currently being used to treat Parkinson's disease and lymphoma where once they found the mutated gene they then created a pharmaceutical drug to "repair" the mutation and treat the disease. That is likely how this will work but it will take a while before we see it in action.


2) questions about if only kids will get the treatment or only adults or both (when it is available)


Many people have asked who this will apply to. This will apply to ALL ages. Consider people with Parkinson's Disease. Doctors found the mutated gene and created a drug therapy to correct the mutation. Anyone who gets Parkinson's will be able to try the new gene therapy. Same with this. They found the mutated gene and will now begin working on a drug that will correct this mutation. I highly doubt the FDA will approve use of a drug on babies first so they will likely try it on adults, when it comes out. However, everyone should continue with their current treatment plans and remain optimistic about the future. But, remember, this will take a while, like a few years, before we see a treatment.


3) question as to whether research is being done for KTS or if this will apply to KTS


According to Dr. Martin Mihm, Jr., head of research for the VBF, the KTS stain is different from the PWS or SWS stain. This study was done by collecting tissue samples from over 300 people with PWS and SWS. I believe they would need to do the same for KTS but it is a good chance for people to start thinking about that study next, if they are not already doing it.


4) when will the therapy be available?


The real question you all want answered is "when"? Gene therapy is still under medical and ethical scrutiny in the USA. Now that the gene has been identified, the next step is to "create" a drug or recreate the healthy gene and put it into a solution to be administered to the individual. Once they have created this "substance" it will undergone strict clinical trials. Once the clinical trials have been evaluated, it will require further FDA and NIH approval before a therapy will be approved for treatment and as I have said, they typically start with adults and then children. They will likely have to create a profile of who should go first. I suspect individuals with SWS who volunteer (adults) will be given preference. We must focus on the fact that they have found a mutated gene, thanking GOD for this miraculous discovery and then the docs will need more tissue samples and funding to continue the research to create the gene therapy. We are talking YEARS before we see a therapy but that means we WILL SEE A THERAPY. This brings hope and excitement to all of us. As I have previously stated, everyone must continue their current lines of treatment until further information is made available.