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.

 

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.

 

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

 




Dr. Linda Rozell-Shannon: The Founder and President of VBF Tells Her Personal Story


In 1994 I gave birth to my daughter, Christine. This was the first miracle that would happen as a result of her birth. I was told in 1979 that I would never conceive a child due to a lack of estrogen. This was devastating to me. I loved children. Because I longed to be a mother, in 1985, I became a licensed foster parent in New York State. Little did I know that God had other, bigger plans for me. I conceived Christine in 1993, without any medical intervention. The doctor would not admit it was a miracle, he just said "sometimes these things happen." I knew it was a miracle, and I gave God all the glory.

 

Six weeks after Christine was born, around mid March of 1994, I noticed a blister-type lesion on her lower lip. I took her to the pediatrician and he said it was a hemangioma. He said it would go away by the time she was two, and not to worry about it. As each week went by, the lesion doubled and tripled in size. Christine before surgeryI found out about a dermatologist in my area that knew about hemangiomas, so I took Christine to see him when she was 3 months old. He took pictures of her hemangioma, as it grew, every 4 weeks; yet offered no treatment options. By the time she was 7 months old, the lesion was the size of a golf ball. Her lower lip hung open and the hemangioma began migrating toward her chin. Then, someone from work told me about an expert in Boston. Christine was 7 ½ months old when I took her to see him. He said I should have gotten her there sooner so she could be treated with steroids. I was devastated to find out that there were treatment options and a window of opportunity in which the steroids would be effective, and I had missed that window. I asked him why the pediatrician didn't tell me about this. He said that vascular birthmarks remain the most misunderstood anomaly in the medical field. He said there were only a few doctors who could accurately diagnose and appropriately treat these lesions. He put Christine on steroids, but they didn't work - it was too late. Her only options were multiple surgeries, or nothing. The "nothing" option was not an option to me.

 

The night we returned home from Boston, I got on my knees and prayed. I made a deal with God. I promised Him that if He would help me find a doctor who would make my daughter look normal, I would dedicate my life to helping parents affected by vascular birthmarks. During the night I had a dream. In the dream, God told me that I was going to start a foundation, write a book and raise a million dollars - all for the cause of vascular birthmarks. Christine after surgeryThat was October of 1994. In June of 1995, I sent Christine's pictures to Dr. Milton Waner. Remember, in 1995 there was no Internet. There was also no book on hemangiomas or other vascular birthmarks for parents, there was no international foundation and very few physicians who knew how to diagnose and treat these lesions. Dr. Waner called me within one week of sending him Christine's pictures. He told me, "I can have your daughter looking normal in a single two-hour out-patient procedure." I knew that God had answered my prayers. Christine had her surgery the following month, when she was 18 months old. True to his word, two hours after the surgery began, Dr. Waner gave my daughter a normal lip. We didn't even recognize her because we hadn't seen her with a normal lip since she was six weeks old. Right then and there I knew Dr. Waner was the one I was going to write the book with.

 

In September of 1995, one month after Christine's surgery, I began the Vascular Birthmarks Foundation (it was known as the Hemangioma and Vascular Birthmarks Foundation until 1998). In 1996, Dr. Waner and I began to work on our book entitled: "Birthmarks, A Guide to Hemangiomas and Vascular Malformations." The book was published in 1997 and remains the only book for parents on this subject.

 

In 1996, together with Dr. Martin Mihm, our Scientific and Research Director, we founded the Vascular Anomalies Clinic at Albany Medical Center. We would go on to assist in establishing another clinic in Boston at the Mass. General Hospital, one in Buffalo, NY; Charleston, SC and several others outside of the United States.

 

Christine in 2002Christine is perfect today. You can see from her picture that there is little sign that there ever was a tumor the size of a golf-ball on her lower lip. VBF has networked over 20,000 children and adults into medical treatment (as of December 2004). In 2001 I authored a chapter in a medical textbook on the subject of vascular birthmarks of the head and neck (through a grant that we received from the Ronald McDonald Charities of the Greater Albany, NY area, we were able to donate 500 copies of this medical textbook to 130 medical schools in the United States and Canada), and in March of 2000, I was the only layperson to present, as faculty, at the American Academy of Dermatology Conference. Today, I am considered the lay expert in the world on these lesions. An honor earned from a promise that I made to God. A promise that I still keep because there are still 40,000 children born each year with a vascular lesions that requires the opinion of a medical specialist. In the summer of 2005 I was matriculated in a PhD program. My dissertation will focus on vascular birthmarks. My goal is to see that every primary care physician is educated to identify vascular birthmarks accurately and to make the appropriate treatment referral. I am also interested in and working on vascular tumor research with our team of top notch research experts. Finding the cause will inevitably lead to the cure and we are very close to discovering the cause. I believe, as does our research team, that this generation will see a cure.

 

VBF has grown to be the leading not-for-profit in the world for providing informational resources to families affected by vascular birthmarks. We have a wonderful Board of Directors and Medical Advisors made up of people who have had a personal experience with a vascular birthmark and doctors who have a passion to help them. VBF would not be where it is without these people. VBF has funded several research projects and our research team (headed by Dr. Martin Mihm, Dr. Paul North and Dr. Milton Waner) is changing the world of vascular birthmarks, for the good. VBF sponsors a medical conference every year that focuses on educating physicians and families about the latest information in diagnosing and managing vascular lesions. We also hold an informal clinic at these conferences where every patient is seen by a team of national experts in the field of vascular lesions.

 

I made a deal with God in 1995. He kept His part by providing Dr. Waner to remove Christine's hemangioma. To this day, I am keeping my part by providing informational resources to families affected by vascular lesions.

 

Remember the beginning of my story, where I told you about my first miracle, the birth of my daughter Christine? There was a second miracle, a second birth---the birth of The Vascular Birthmarks Foundation. And, I am proud to say that I am the mother of both. May God bless you and your family. I pray that VBF will make a positive difference in your life, as it has in mine.

 

My "Vision" for the future of VBF is that we will have a multi-disciplinary treatment center in every state in the country and every country outside of the United States. I also want to see the day when all physicians graduating from medical school will have the knowledge to accurately diagnose and treat vascular lesions. Lastly, I pray to see the day when research will point to the cause and eventually the cure for all vascular lesions.

 

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