Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

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.

 

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

 




MacKenzi XiaFang's Story


Update!

MacKenzi is here with her new family!

MacKenzi 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.

Mackenzi's soon-to-be-familyAfter 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.

Mackenzi XiaFangOur 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