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

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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

 




The Board


Staff

Linda Rozell-Shannon and ChristinePresident and Founder -
Linda Rozell-Shannon, PhD
Linda and her daughter, Christine, reside in upstate New York. Linda founded VBF after her daughter was born with a hemangioma on her lower lip and she was unable to find information on treatment options. Dr. Waner surgically removed Christine's hemangioma in 1995. Linda and Dr. Waner wrote the only book for parents on the subject of birthmarks called "Birthmarks: A Guide to Hemangiomas and Vascular Malformations." Linda is also a chapter author in the Facial Plastic Surgery Clinics of North America textbook on "Vascular Birthmarks of the Head and Neck" (published in 2001), which was guest edited by Dr. Marcelo Hochman.

 

Dr. Linda Rozell-Shannon completed her PhD in 2008 at Walden University. Her dissertation topic: Assessing the Impact of Hemangiomas on Maternal Stress was written to support insurance appeals for families denied coverage.

 


 

Office Manager
Lauren Palmateer
Lauren PalmateerLauren Palmateer is the Financial Administrator for VBF. She has been with VBF since the summer of 2001 and has served VBF in a number of capacities over the years. Lauren is a wife, mother and high school history teacher at a school in Upstate New York. She has an interest in medical issues and a love for children.

 

 

 

 


 

Honorary Chairpersons


Frank and Barbara CatalanottoPlease join the VBF in welcoming professional baseball player Frank Catalanotto and his wife Barbara as Honorary Chairpersons. We know that by having their enthusiasm and support, VBF can make a real difference in this world.

 

Frank Catalanotto was one of the top hitters in the Major Leagues in 2001, finishing with a batting average of .330 and challenging for the American League batting title.

 

While Frank is a professional baseball player with an impressive record, he is also a spouse and parent just like you and I. And when he and Barbara had their daughter in 1999, they were perplexed by a strange mark on her face that was soon diagnosed as a type of vascular birthmark called a "hemangioma."

 


 

VP and Director of Advocacy Alliance
Brian Bolinger
Brian A. Bolinger has been a member of the Board of Directors for the Vascular Birthmarks Foundation since 2006.


 
Mr. Bolinger is currently the President of Bolinger Consulting, where he assists companies with strategic planning, implementation, business model development, team building and customer growth.  Previously, Brian was the President and Chief Executive officer of Apollo Power & Light, LLC, a retail electric provider based in Dallas, Texas. Prior to starting Apollo, Mr. Bolinger was Vice President of Legal Affairs and Operations for dPi Teleconnect and dPi Energy. Mr. Bolinger has also served as Corporate Counsel and Director of Human Resources for Smock Fansler Corporation, a large commercial construction company based in Indianapolis, Indiana.


 
Brian earned his bachelor’s degree from DePauw University in Greencastle, Indiana, his master’s degree from Midwestern State University in Wichita Falls, Texas and his doctorate of jurisprudence from Indiana University School of Law in Indianapolis, Indiana.


 
Brian and his wife Natalie, who is also a member of the Board of Directors for the Vascular Birthmarks Foundation, become involved with the foundation after their daughter Nicole “Coco” was born with a compound cheek hemangioma in 2003. Through the foundation, the Bolingers were networked to a physician who, through a series of six surgeries, completely removed both of Nicole’s hemangiomas.


 
Brian and Natalie started the Angel’s Kiss Gala in 2003 to raise awareness and funds for the Vascular Birthmarks Foundation.


 
Brian and Natalie reside in Corinth, Texas and have two children.

 


 

Secretary and Parent Rep
Tiffany Ethington
Tiffany lives in Kentucky and has worked behind the scenes for years, helping with projects and supporting efforts concerning Sturge-Weber syndrome (SWS). Her son, Glen, was born with the rare disease. Tiffany, along with others affected by SWS, helped to found the Sturge-Weber Syndrome Community (SWSC). Tiffany and Glen have been advocates for SWS and vascular birthmarks, and have spearheaded fundraising campaigns and awareness projects. She also serves as the Patient Advocate and Welcome Volunteer for the SWSC.

 


 


VBF Director of Family Services
Corinne Barinaga
Corinne has a B.A. in Communications and Advertising. She lives in the Seattle, Washington area with her husband and their four boys. Their son, Nicholas, had a large segmental hemangioma. Corinne's quest to learn about her son's condition resulted in her becoming the manager of the MSN Vascular Birthmarks Support Group. She is a staunch advocate for parents. Her mission is to educate the public and physicians about the latest information concerning the diagnosis and management of vascular birthmarks. She is available to answer your questions and direct you to the appropriate physician and resources. Corinne is dedicated to working with families on an individual basis to address their specific needs.

 


 

Director of International Chapters
SWSC Director
Glenda Ethington
Glenda Ethington is cofounder of the Sturge-Weber Syndrome Community, a worldwide organization for individuals and families living with Sturge-Weber syndrome (SWS.) Her grandson, Glen, has SWS and she was inspired by his courage to form an Internet support group for SWS, which eventually led to the SWSC chapter membership into the VBF. She has a background in print journalism, and currently resides in Kentucky.

 


 


 

Parent Representatives


Natalie Bolinger
Natalie BolingerNatalie, her husband Brian, and their two children Brock and Nicole live in the Dallas suburb of Corinth, Texas. Nicole was born with a compound hemangioma on her right check at the corner of her eye and nose. The VBF networked the family with Dr. Waner who, through a series of surgeries, completely removed the hemangioma. Brian is a corporate attorney and in 2003 he and Natalie began the North Texas Vascular Birthmarks Foundation Benefit which has become the largest annual fundraiser for the VBF.

 

 


 

Leslie M.W. Graff
Psychosocial/Developmental Expert
Leslie has a Bachelors in Elementary Education and Masters in Marriage, Family, and Human Development from Brigham Young University. She completed her child life training at Johns Hopkins Children's Center and is a certified child life specialist, trained to address the psychosocial/emotional needs of children and adolescents in relation to their medical conditions by providing psychological preparation, and therapeutic support activities. She worked as a child life specialist at University of California San Francisco Medical Center and was on the faculty at Ohlone College. She has worked with thousands of children in countries around the world as a child life specialist for Operation Smile medical missions She lives in Massachusetts with her husband and 3 sons. One of her sons has a port wine stain.

 


 

Lianne Chase
Lianne and her husband, Kevin, and two sons, Casey and Cody live in Albany NY. Lianne joined the the VBF as a Parent Representative to assist other parents and children find the right path to meeting their birthmark needs. The VBF was instrumental in her son Cody having his lymphatic malformation removed from his right hand in 2005 by Dr. Joseph Upton at Boston Children's Hospital. Lianne is aan Electric Design Representative for National Grid Electric Company.

 


 

Marvin Kalafer, M.D. and Dinah Gonzalez, M.D.
Marvin and Dinah live with their daughter Marisa in Washington Crossing, Pennsylvania. Marisa developed a large upper eyelid hemangioma that was removed by Dr. Waner when she was 5 months old. Both Marvin and Dinah practice Obstetrics and Gynecology.

 


 

 

Erin Miller
VBF California Chapter Treasurer

Erin Miller is the Director of Development at the Beckman Laser Institute and has done fundraising for children who can’t afford laser treatment for the removal of their port wine stain birthmarks. She organizes the VBF Conference every other year when it’s held in Irvine, California. Erin lives in Southern California with her husband and their three children. She is currently the Treasurer of the VBF California Chapter and enjoys working with the Vascular Birthmarks Foundation.

 

 


 

Jennie Legary
Coordinator, VBF Musicians for Birthmarks
Jennie, an opera trained singer, is the Coordinator for VBF Musicians with Birthmarks. She lives in NYC and has a port wine stain on her arm.

 

 

 

 


 

Elysa Baron
Elysa and her family live in Saratoga Springs, New York. Elysa's daughter was born with an extensive facial hemangioma which included the lower lip and both sides of her face. Her daughter received alpha-interferon treatments at an early age and has had reconstructive surgery with both Dr. John Mulliken and Dr. Milton Waner. Elysa is a Doctor of Chiropractic.

 


 

Lauri Firstenberg

Lauri Firstenberg is the mother of Edie Yvonne Firstenberg, her  five year old daughter who was born with an extensive port wine stain and was diagnosed with KT Syndrome at the age of 2.  It is only with the help of the Vascular Birthmark Foundation that the family received a proper diagnosis for Edie and found a team of experts through VBF to monitor and care for Edie.  Firstenberg received her Ph.D. in the History of Art and Architecture at Harvard University in 2005 and that same year she founded the leading independent contemporary arts organization in Los Angeles - LA><ART - supporting artistic and curatorial freedom.  Firstenberg has recently launched RTM Projects producing limited editions with artists and designers, RTM Vintage - a curated line of vintage modernist jewelry and RTM Consulting - a consultancy for cultural nonprofits.

 


 

Andria Gottsabend
Andria and her family live in Philadelphia, Pa. Her daughter Olivia was born with a Port Wine Stain on her face, neck and head. Olivia has had over twenty-five laser treatments to lighten the birthmark. Olivia has also had two surgeries to the left eye due to glaucoma, caused by the birthmark. Andria became involved with VBF in 2012 when she started Olivia's Walk for Birthmarks. Olivia's Walk has become an annual event since.

 

 

 


 

Gen Mailloux

Genevieve Mailloux is VBF's social media coordinator. She has been working for VBF for two years. She is also a second year nursing student in upstate New York.

 

 

 

 


 

Nelson DeJesus

Graduated from Penn State University, Abington College of Sciences with a Bachelor’s degree in Information Sciences and Technology (IST) with the Integration and Application Option. Co-founder of the Computer Club at Abington College. Professional career includes database administration, application development, graphical design, web site development, and management. Fluent in English Portuguese and Spanish. Singer, saxophone and guitar player for D-Axis Band. Enjoys playing soccer, Formula 1 Racing and travelling. Married to his lovely wife and best friend Ana; first daughter born with a port wine stain.

 

 

 


 

Kyla Manny

Kyla and her husband, Jeff live in Guilderland, NY along with their son Chase.  When Chase was first born they noticed a small mark under his right eye that continued to grow.  By a chance encounter they met Dr. Linda Rozell-Shannon walking through the mall.  They were instantly referred to doctors that put all their worries at ease.  After several treatments, Chase’s hemangioma is almost completely gone.  Kyla joined VBF as a parent representative to help bring awareness as well as assist in anyway with helping parents and children receive the treatment that they need.

 

 

 

 


 

Honorary Medical Co-Chairs

Co-Chairs of the Research and Scientific Advisory Committees
Dr. Martin Mihm and Dr. Stuart Nelson

Dr. Mihm       Dr. Nelson

Martin Mihm, Jr., MD, Director
Dr. Mihm is one of the founding members of VBF. He also founded the Albany Medical Center Vascular Anomalies Program and the Massachusetts General Hospital Vascular Anomalies Program. He is the Director at both clinics. Dr. Mihm is responsible for having the World Health Organization Rare Tumor Institute classify a hemangioma as a “rare tumor.” He is Professor, Department of Pathology, Harvard Medical School and Massachusetts General Hospital, in Boston, Massachusetts and is the leading Pathologist in the country studying vascular anomalies. He is also Co-Director of the WHO melanoma pathology and is the Director of the Vascular Tumors Research Team and the Scientific Advisory Committee.

 

J. Stuart Nelson, M.D. Ph.D.
Dr. J. Stuart Nelson is Associate Director of the Beckman Laser Institute and Medical Clinic, and Professor of Surgery, Dermatology and Biomedical Engineering, University of California-Irvine.

 

The principal goal of Dr. Nelson’s research has been to address the problems associated with light propagation and dosimetry in human skin with the end goal of improved clinical efficacy. Dr. Nelson developed a novel and efficient method of cooling (“Dynamic” or cryogen spray cooling) human skin in conjunction with laser dermatologic surgery. Clinical studies have demonstrated the safety and efficacy of this approach during laser treatment of pediatric port wine stain birthmarks and other hypervascular skin lesions, removal of unwanted human hair, wrinkle reduction, scar improvement and management of acne.

 

Worldwide, this methodology developed by Dr. Nelson has now been incorporated into several thousand laser devices. Dr. Nelson has published more than 270 scientific articles and 13 book chapters. Dr. Nelson served as President of the American Society for Laser Medicine and Surgery (ASLMS) 2001-2002 and was the Program Chairman of the Joint International Laser Conference (co-sponsored by the ASLMS, British Medical Laser Association and European Laser Association) held in Edinburgh, Scotland in September 2003. He was the Program Chairman for last year’s Annual ASLMS meeting. He assumed the position of Editor-in-Chief of the ASLMS journal Lasers in Surgery and Medicine in April 2005.