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

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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. 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. 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.

 

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 (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

 




HEMANGIOL study


Has your baby developed infantile hemangioma, also known as strawberry birthmark? 

If your child has developed infantile hemangioma (also known as strawberry birthmark), a new research study may be of interest to you.

 

THIS STUDY MAY BE APPROPRIATE FOR YOUR CHILD IF HE/SHE:
· Is between 35-150 days old
· Has at least one hemangioma 1.5 cm in diameter
· Has not received previous treatment for hemangioma

 

Infantile hemangiomas (IH) are red blemishes or bumps made up of small blood vessels. They affect around 3 to 10% of children born, and may appear on the head, face and neck in approximately 50% of cases. They are often not present at birth and usually become more obvious in the first weeks thereafter. Although many IHs shrink and disappear without medical intervention by the age of 10, some do not and may cause residual lesions and/or complications including vision and airway obstruction. Current IH treatments include surgery, laser treatment, cryotherapy, corticosteroids and vincristine. The HEMANGIOL study looks to explore a new possibility by determining whether a treatment that is already licensed and used for various conditions in adults can reduce hemangioma growth in infants aged 35 – 150 days. The HEMANGIOL study will compare a placebo to propranolol in approximately 450 children with IH worldwide.

 

The HEMANGIOL study is enrolling at doctor’s offices in California, Georgia, Illinois, Maryland, Massachusetts, Missouri, New York, Oregon, Pennsylvania, Texas and Washington. To learn more about the HEMANGIOL study or to pre-qualify your baby, visit www.birthmarkstudy.com or call 800-658-7871.

 


Also:

Has your baby developed infantile hemangioma, also known as strawberry birthmark?

 

Three centres in Australia are conducting a research study looking infants with proliferating infantile hemangiomas (IHO) that require medication. This study will evaluate the use of an investigational drug, V00400 SB (also known propranolol) in the treatment of hemangiomas.

 

THIS STUDY MAY BE APPROPRIATE FOR YOUR CHILD IF HE/SHE:
· Is between 35-150 days old
· Has at least one hemangioma 1.5 cm in diameter
· Has not received previous treatment for hemangioma.

 

Infantile hemangiomas (IH) are red blemishes or bumps made up of small blood vessels. They affect around 3 to 10% of children born, and may appear on the head, face and neck in approximately 50% of cases. They are often not present at birth and usually become more obvious in the first weeks thereafter. Although many IHs shrink and disappear without medical intervention by the age of 10, some do not and may cause residual lesions and/ or complications including vision and airway obstruction. Current IH treatments include surgery, laser treatment, cryotherapy, corticosteroids and vincristine. The HEMANGIOL study looks to explore a new possibility by determining whether a treatment that is already licensed and used for various conditions in adults can reduce hemangioma growth in infants aged 35 – 150 days. The HEMANGIOL study will compare a placebo to propranolol in approximately 450 children with IH worldwide.

 

If you wish your child being seen to evaluate potential participation in this clinical trial, please contact:

 

- Sydney Children’s Hospital (Randwick - Sydney) - Dr Orli Wargon
Name of the person to contact : Susan Smith
Phone number: 9382 0512 or 0410 341 114
Email: susan.j.smith@sesiahs.health.nsw.gov.au

- Royal Children’s Hospital (Melbourne) - Dr Roderic Phillips
Name of the person to contact : Rod Phillips
Phone number: 03 93455522
Email: rod.phillips@rch.org.au

- Box Hill Hospital (Box Hill - Melbourne) - Dr John Su
Name of the person to contact : Althea Barr
Phone number: 9094 9544 or 0448 040 185
Email: althea.barr@monash.edu 


 

Does your baby have an infantile haemangioma?

Two centres in New Zealand are conducting a research study treating infants with proliferating infantile haemangiomas (IH), previously called strawberry birthmarks, with a medicine known as propranolol (V00400 SB). This medication has been used for many years in infants with heart problems.

 

THIS STUDY MAY BE APPROPRIATE FOR YOUR CHILD IF HE/SHE :
• Is between 35-150 days of age
• Has at least one haemangioma, 1.5 cm in size
• Has not received any treatment for the haemangioma.

 

Infantile haemangiomas (IH) are red blemishes or bumps made up of small blood vessels. Up to 1 in 10 newborns may develop one. They can appear anywhere on the body but about half do so on the head, face or neck. They are often not present at birth but become more obvious in the first weeks of life. Whilst many haemangiomas will shrink and disappear by the age of 10 years without treatment, some do not. Current haemangioma treatments include surgery, laser treatment, cryotherapy, oral steroids and vincristine. The HEMANGIOL study looks at using a well established heart medicine, propranolol (used to control heart rhythm and blood pressure in both children and adults) to treat infantile haemangiomas in infants 35 – 150 days of age. The HEMANGIOL study will compare a placebo (a dummy medicine) to propranolol, in approximately 450 children worldwide.

 

If you are interested in your child being seen to evaluate potential participation in this clinical trial, please contact:

 

Waikato Clinical Research (Hamilton) - Prof Marius Rademaker
Contact person:    Andrea Port or Eileen Bisley
Phone number:    07 843 0105 or 027 252 0990
Email:   research@wc.net.nz

 

Auckland Dermatology (Auckland) - Dr Nicholas Birchall
Contact person:   Susan Devonshire
Phone number:   0220 807112
Email:   nick.birchall@dermatology.co.nz