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
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.

 

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

 




Press Releases


March 2014

Hemangeol Approved by FDA for Treating Hemangiomas

 

May 2013

Rocky Mount (NC) Telegram's Article for VBF's Day of Awareness

 

New mother Jessie Langley said it isn’t her 9-month-old daughter’s toothless smile, her giggle or even her vivacious personality some people notice first. A quarter-sized raised red mass on Lennox Langley’s head oftentimes is what catches people’s attention.

 

“I’ve got this new baby, and I want to show her off, but (it is something that I think about),” Jessie Langley said. “If I have a bow or a headband, I’ll put that on her, not because I’m ashamed of the hemangioma, but I want people to appreciate all the other cool things about her, not just her birthmark.”

 

Doctors are unsure what causes the buildup of blood vessels in one spot. Hemangiomas vary in size and placement. Lennox Langley’s is in the middle of her head while other babies – mostly white females – have them around their nose, eyes, lips or neck.

 

“She had a little red dot that started appearing at about two weeks old, but we thought it had to do with the heart rate monitor they put on her head,” Jessie Langley recalled. “At that point, it was about the size of the barrel of a pen – just a flat red dot – but it started raising when she was about two months old.”

 

She said she talked to her pediatrician about the growth, but he said it’d go away in a few months.

 

“At about four months, we believed what we’d been told, but it was still growing,” she said. “He told us it would go away and was not a big deal, but I started looking into it on my own because I felt like I needed to know more.

 

He kept saying it was harmless and would go away and we believed him, but when you have something growing on your baby, especially on her soft spot, it is really scary.”

 

Through her research, she found similar stories of parents encouraged to ignore growths by their pediatricians, who eventually stumbled on the Vascular Birthmarks Foundation’s website.

 

Dr. Linda Rozell Shannon, who started the foundation, told Jessie Langley and her husband, Alex, that their daughter’s hemangioma was about a 2.5 on a 10-point scale, with 10 being the most severe case. Shannon said it likely would flatten by the time she was 3 or 4 and would lose redness by age 10.

 

The Langleys have opted not to pursue medical intervention, especially since insurance largely considers birthmark procedures cosmetic.

 

Jessie Langley said strangers have asked in a less-than-polite way about the mark – a common problem for parents of children with vascular birthmarks.

 

“I don’t have a problem with people asking about it, but instead of starting there, why don’t they start with how old she is or how cute or happy she is,” Jessie Langley said. “We call it her unicorn knot, so should we keep the unicorn in the room or talk about it?”

 

She recently ordered Buddy Booby’s Birthmark, a children’s book about a red-footed bird born with a birthmark who is discriminated against by other animals based on the mark. She said she hopes to share it with others to bring sensitivity to the issue and lessen bullying about it.

 

“I found out how common this is, but I never see anyone with them or books with kids who have birthmarks,” she said. “Books and media are representative of different cultures, but not this. I just hope people learn more about vascular birthmarks and reduce some of -the fear associated with them.”

 

  

October 2010

Hyleri Katzenberg: Shame on You Piggy Health Insurers!



North Texas moms raise awareness of disfiguring birthmarks



Hyleri Katzenberg: Not Just a Birthmark: The Struggle Against Vascular Deformities



Vascular Birthmarks Foundation to Host 'Mark of Beauty' Gala and Medical Conference



March 2010

Dr. Llinda interviewed for Parent Map



Bell Family Faces Daughter's Painful Condition - part 1

Bell Family Faces Daughter's Painful Condition - part 2

February 2010

VBF quoted in New York Times



August 2009

SheKnows.com features a question and answer session with Dr. Linda
Understanding Vascular Birthmarks on Your Baby

 


Pediatrics for Parents features Dr. Linda
Click here for the pdf version

 


 


Hospital Removes Girl's Spreading Birthmark
WBZ (CBS-Boston) TV
http://wbztv.com/video/?id=74822@wbz.dayport.com (video)


WBZ (CBS-Boston) Web site
http://wbztv.com/local/birthmark.removal.program.2.973298.html (text story)

The Observer Tribune
November 7, 2008
[PDF Observe1]

The Observer Tribune
November 13, 2008
[PDF Observer]

AOL Living--Parent Dish
November 25, 2008
http://www.parentdish.com/2008/11/25/when-is-a-birthmark-cause-for-concern/

The Times Union
November 30, 2008
http://timesunion.com/AspStories/story.asp?storyID=
745078&category=YTNISKAYUNA&BCCode=LOCAL&newsdate=11/30/2008


The Lake Cities Sun
December 3, 2008
http://www.lakecities.com/main.asp?SectionID=2&SubSectionID=86&ArticleID=4238&TM=38193.28

The Saratogian
December 8, 2008

http://www.saratogian.com/articles/2008/12/08/news/doc493c9dcb53133334849222.txt

Vascular Birthmarks Foundation to Host “Mark of Beauty” Gala, Conference AND AUCTION

- Organization Works to Increase Awareness & Support of Serious and Misunderstood Anomaly -

New York -- October 17, 2008 -- The Vascular Birthmarks Foundation (VBF) will be hosting its “Mark of Beauty” Gala and 2008 Vascular Birthmarks Conference on November 14-15, 2008, in Manhattan.

VBF is an organization dedicated to helping children and families affected by birthmarks, tumors, and syndromes receive proper diagnosis and treatment. Dr. Linda Rozell-Shannon founded VBF after her daughter was born with a hemangioma on her lower lip and she was unable to find information on treatment options.

According to Dr. Rozell-Shannon, vascular birthmarks are a largely unreported medical phenomenon that affects one in ten children born annually; with approximately 40,000 being so significant that they require the opinion of a specialist. Since insurance companies frequently deny treatment and because there are so few treatment centers or specialists, many children are left with a severe deformity, breathing difficulties, eating issues, blindness and, in some cases, death.

“During initial diagnosis, 90-95 percent of doctors will say that nothing can be done,” says Dr. Rozell-Shannon. (Shannon earned her PhD in order to help families affected by these lesions.) “There is an urgent need to raise awareness in parents, as well as doctors, that there are critical treatment options available.”

Concerned parents will have an opportunity to have their children examined and diagnosed at the 2008 Vascular Birthmarks Conference on November 15, beginning at 8:30 a.m. This program, which will take place in conjunction with the Vascular Birthmark Institute at Roosevelt, at Beth Israel’s Phillips Ambulatory Care Center branch (10 Union Square East in Manhattan), will also include lectures by the top specialists in the country on the latest information in the diagnosis and treatment of these lesions. (Reservations are required.)

The Mark of Beauty Gala will be held on Friday, November 14 from 7:00 p.m. to 10:00 p.m. at the Hudson Theatre in the Millennium Broadway Hotel New York, 145 West 44th Street in Manhattan. The event will feature a musical performance by stars of “Phantom of the Opera”, hors d’oeuvres and open bar, and a silent auction of celebrity items.

The exciting auction items include guitars signed by Miley Cyrus and the Jonas Brothers; a bat signed by Reggie Jackson; a 2007 New York Giants signed helmet; a Derek Jeter signed and framed New York Yankees jersey; a Sandy Koufax signed and framed L.A. Dodgers jersey; a Magic Johnson signed/encased basketball; a Joe Montana signed/encased 49ers helmet; a David Wright autographed bat; Yankees, Mets, Giants, Jets, Patriots and Red Sox memorabilia; and other many other collectibles.

People can also bid on a NASCAR driving experience; a Fighter Pilot for a Day experience; a trip for 4 to the 2009 Masters; a Sonoma Wine Extravaganza; and VIP tickets to many events.

For information on the clinic, gala, and auction – and to make reservations and obtain tickets – please visit www.birthmark.org or contact Basia Joyce at (518) 374-2062 or basiajim99@nycap.rr.com.

VBF is also seeking corporate sponsors as well as donations of silent auction and gift bag items. (All donations are tax deductible.) Please contact Basia Joyce if you would like to contribute to this organization—which has had such a profoundly positive impact on more than 35,000 families worldwide.

About Vascular Birthmarks Foundation (VBF):

Vascular Birthmarks Foundation (VBF) is the leading not for profit in the world for families afflicted with vascular birthmarks, tumors or syndromes. It is an international organization that networks families to the appropriate medical professionals for evaluation and/or treatment and provides informational resources. VBF also sponsors physician education, research, and programs that promote acceptance for living with a birthmark. Programs include Babies with Birthmarks, Orphans with Birthmarks, and VBF Day of Awareness.

# # #


Evan Ducker Featured on Bay News 9
See the story here

 

Brown Family's Slideshow

April 28, 2004 is a day the Brown family will never forget. It marks the anniversary of Aslynn Brown's surgery to remove a massive hemangioma. Three years later, Aslynn's mother, Jill Brown, made a slideshow to reflect on their journey and the miracle that Dr. Milton Waner performed.

Just as the Brown's will never forget that day, we will never forget Aslynn and the Brown family for sharing their story and bringing awareness for vascular birthmarks.

Slideshow - The Amazing Journey of Aslynn Brown

Donna and Evan Ducker and Buddy Booby Make it Big...

CBS Early Show
CBS Affiliate Story

VBF Gets Referenced in Buddy Booby Birthmark Articles

CBS Early Show
CBS Affiliate Story

PRESS RELEASE

Vascular Birthmarks Foundation Founder to make appearance in Binghamton

Monday December 4, 9:00 am ET

Binghamton, NY – December 4, 2006 – FACES Publications, LLC announced today that Vascular Birthmarks Foundation founder Linda Rozell Shannon will make an appearance at its annual Book Release Party on Thursday December 7, 2006 at 7:00 p.m. at the Anthony Brunelli Fine Arts Gallery, 186 State Street in Binghamton.

Rozell Shannon is the President of the Vascular Birthmarks Foundation and is the world's leading lay expert in the field of Vascular Birthmarks. Her remarkable dedication and outreach have made treatment possible for thousands of children all over the world who suffer from various birthmark anomalies. Rozell Shannon wrote the forward in the 2007 edition of FACES of the Southern Tier which will be showcased at the release party.

“We are extremely honored to be hosting Linda Rozell Shannon in Binghamton this week. She has made a phenomenal impact on thousands of children and families all over the world with her tireless efforts in her assistance with finding treatment for vascular birthmarks”, said Roger L. Brooks, editor-in-chief of FACES Publications. “I can attest first hand to the tremendous amount of information my wife and I received from the VBF website when we were trying to find treatment for our daughter in 2002.”

In 1995, with the help of Dr. Martin Mihm, Rozell Shannon started the Vascular Birthmarks Foundation. In 1996, she began her work on a book entitled, "Birthmarks, A Guide to Hemangiomas and Vascular Malformations." Published in 1997, it is still the only publication available on the subject that is written for parents.

For more information on vascular birthmarks, please visit the website at www.birthmarks.org. If you would like to interview Linda Rozell Shannon please contact Roger L. Brooks to make arrangements.

Contact:
Roger L. Brooks
Editor-in-Chief
FACES Publications, LLC
49 Court Street, 2nd FL
Binghamton, NY 13901
Phone: 607.723.0324/ 607.343.7864
http://www.tierfaces.com
roger.brooks@tierfaces.com


First Ever All Birthmarks Conference -- A Chance of a Lifetime

http://prweb.com/releases/2006/10/prweb446886.htm


VBF President and Founder Linda Rozell-Shannon is quoted and referenced in the May 2006 issue of Babytalk magazine (page 15)...a small blurb on birthmark news.

VBF Celebrates 3rd Annual International Awareness Day

Get the press release (pdf)

Interview with Donna Ducker, author of Buddy Booby's Birthmark on Connecticut's News Leader

See the interview


News


Changes, Chance and Charity – Linda’s saga

Read how Linda Rozell-Shannon was inspired to found the VBF and later became the recipient of the prestigious Jefferson Award, considered the Nobel Prize for public and community service.

VBF President/Founder Featured As Walden University's "Making A Difference" Student

Read more here


VBF Gets Million Dollar Donation

VBF President and Founder Linda Rozell-Shannon announced today (November 16, 2005) that an anonymous donation of $1,000,000 for research and physician education has been donated to VBF with Dr. Milton Waner as overseer of the research and physician education programs. Research projects are currently being defined and we will be reporting to you on these programs as they are finalized.

NOTE: This donation is designated for Research and Physician Education. We are very excited about the great strides this money will make in these two program areas. However, we continue to rely on your generous donations to fund our daily operations. Please continue to help us to make a difference by making your annual charitable donation to VBF to fund our daily operations.

First Research Project Funded -
Hear From The Chief Investigator
About The Hope For A Drug to Shrink Hemangiomas And
Eliminate The Need For Surgery!!!

This is a collaborative effort that includes the team of Dr. Milton Waner, Dr. Lou Fink, Dr. Ma, and Dr. Theresa O.

Research Grant Application


Read more here


Linda Rozell-Shannon speaks to Capital News 9!

See the video here