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.

 

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

 




Parent's List


The following individuals have all agreed to be a resource for VBF. Some are parents or relatives of someone born with a vascular birthmark and others are adults who have or had a vascular birthmark. These individuals have agreed to be representative of VBF in that they have made themselves available either by phone, in person, or by writing to discuss your mutual experiences in dealing with a vascular birthmark. None of these individuals represents themselves as a medical expert nor do we propose that they are a medical expert. The Family Resource List is in alphabetic order by state. Family resources outside of the US are listed at the end in alphabetic order of country.

How to Appeal an Insurance Denial or Request Out-of-Network Treatment (pdf)

What Our Families Are Saying About Us

 



OUTSIDE OF THE UNITED STATES

A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
OTHER

 

 

Alabama

Corinne Barinaga
VBF Director of Family Services
vbfadvocate@live.com
Snohomish, WA
My son was born in April 2004. A few days after we were home from the hospital we started seeing the segmental Hemangioma spread like wild fire across the right side of his face toward his eye. The Hemangioma is in the upper inner eye lid. The right side of his face is covered and some in his ear, and back of his neck. It took only two weeks for it to become dark red and start to thicken. He was on oral steroids from 6 weeks old to 4 1/2 months old. He started laser treatments at 4 months old and continues to have them every 8 weeks.

 

 

Alaska

Corinne Barinaga
VBF Director of Family Services
vbfadvocate@live.com
Snohomish, WA
My son was born in April 2004. A few days after we were home from the hospital we started seeing the segmental Hemangioma spread like wild fire across the right side of his face toward his eye. The Hemangioma is in the upper inner eye lid. The right side of his face is covered and some in his ear, and back of his neck. It took only two weeks for it to become dark red and start to thicken. He was on oral steroids from 6 weeks old to 4 1/2 months old. He started laser treatments at 4 months old and continues to have them every 8 weeks.

 

 

Arizona
Renae Garrett
Arizona Representatives
e-mail: drgarrett1000@yahoo.com
Renae has a vascular malformation in her cheek

 

 

Monica Camou
Mesa, AZ
monicacamou@yahoo.com
Daughter has a VM of the upper lip

 

 

Laura Visser
Mesa, AZ
laurakvisser@yahoo.com

 

 

Valerie Higgins
val599@cox.net
Phoenix, Arizona
My daughter has a very large port wine stain that travels the length of her body from her head to her toes, only her right leg does not have any birthmark. She is 9 years old and has been receiving laser treatment since she was 12 weeks old, to date she has had more than 60 treatments. We travel from Phoenix to Irvine, California in order to see Dr. Stuart Nelson at the Beckman Laser Institute. We attend the Vascular Birthmark Foundation conference every other year in order to stay abreast of the latest developments with regard to the treatment of PWS. Two years ago our daughter was also diagnosed with KT Syndrome as well. I have been through 4 insurance companies since her birth and now am learning the ropes on travel assistance as well as appealing with insurance. I am always available to answer questions and/or talk with parents that are facing the same challenges as we have. We have picked up a lot of information along the way and have benefitted from sharing information and stories with other families.

 

 

Arkansas

 

 

Mary Ellen Mathers
Siloam Springs, AR
479-524-3363
Daughter with Lymphatic Malformation. Treated by Dr. Milton Waner 1995-present. Sugical excision, steroid injection.

 

 

California

 

 

Jennifer Stern
Jeffrey Pugh
Saratoga, CA 95070
408-868-9542
jennifer.stern@sbcglobal.net
jeffrey.pugh@sbcglobal.net
Jennifer and Jeffrey's daughter Catherine had a hemangioma on her lower lip. Catherine was treated with steroids and eventually had her hemangioma surgically removed by Dr. Edwin Williams. Jennifer was VBF's first President and Jeffrey was one of VBF's first Parent Reps.

 

 

Tom & Pat Koch
California
tkoch@turnaroundcap.com
Tom & Pat's son Keenan had a lower facial and lip hemangioma

 

 

Staci Harris
Southern California Resource
Wildomar, CA 92595
firemanjoe@yahoo.com
(909) 674-1306

 

 

Ken Miller
KWMiller@aol.com

 

 

Cyndi Raftevold
Bishop, CA 93514
760-872-4269
CARAFT@aol.com
Son had an airway hemangioma.

 

 

Laura Hula
Brawley, CA 92227
thehulas@brawleyonline.com
Daughter Tiffany had vascular malformation that was removed by Dr. Waner.

 

 

Angeline Russell
Brentwood, CA
volvowmn@pacbell.net

 

 

Dawn Da Rosa
San Jose, CA
408-371-5337
dawndarosa@hotmail.com
Dawn's daughter has a large hemangioma on her neck. Tried oral steroids and
laser treatment with continued growth. Hemangioma was successfully removed by Dr Reinisch in Los Angeles.

 

 

Anne Josephson
Los Angeles, CA
home--310-827-8341
work--310-287-9886
email jaggym@hotmail.com
My daughter Abrielle (now 11) has been a patient of Dr. Waner's since she was 2 years old. Her nasal tip hemangioma was rather serious and she had multiple surgeries to correct it, the most recent to give her a nasal tip and to remove the last vestages of the hemangioma.

 

 


Mary Montelongo
Mission Viejo, CA 92691
mhmonte@hotmail.com
My one year-old daughter has a large, superficial hemangioma covering most of her left hand and forearm. She is receiving laser treatments from Dr. Brandie Metz of UCI at the Beckman Laser Institute in Irvine, California.

 

 

Heidi Marijczyn
Laguna Beach, CA 92651
audaciousred@hotmail.com
I have a facial venous malformation that covers my lip and the left side of my face, along with the tongue and soft palate area.

 

RYANN SWEENEY
ryannsweeney@gmail.com
Carlsbad, CA 92008
First noted as a baby. Pathological fracture. Trouble bearing weight throughout childhood. Arthroscopy with YAG laser to improve walking. Over 40 alcohol abalations. Now a happy patient of Dr. Wayne Yakes.

 

Rhonda Geske
rhondageske@gmail.com
San Diego, CA 92131
14 year old son with facial PWS on the left cheek. He has been in treatment with Dr. Nelson at UCI Beckman Laser Institute since 1997.

 

 

Colorado

 

 

Dan and Robin Simpson
Englewood, CO
303-694-9216
drsimpson5@msn.com
Their son James was born with a vascular malformation of neck and tongue and was treated by Dr. Yakes and also by Dr. Waner

 

 

Nicole & Mike Dorame
Lakewwod, CO
720-962-0906
Mndor2631@aol.com
Daughter born with Hemangioma at back of her head base of neck.

 

 


Connecticut

Corinne Barinaga
VBF Director of Family Services
vbfadvocate@live.com
Snohomish, WA
My son was born in April 2004. A few days after we were home from the hospital we started seeing the segmental Hemangioma spread like wild fire across the right side of his face toward his eye. The Hemangioma is in the upper inner eye lid. The right side of his face is covered and some in his ear, and back of his neck. It took only two weeks for it to become dark red and start to thicken. He was on oral steroids from 6 weeks old to 4 1/2 months old. He started laser treatments at 4 months old and continues to have them every 8 weeks.

 

 

Delaware

 

 

Amanda Jackson
Hartly, DE
amandie_826@yahoo.com
My daughter Madeleine just turned 3 in September
and has three hemangiomas. One on her eyelid, a superficial one on
her back and a compound on her face. She has had the one on her face
removed and lasered by Dr. Waner in February 2005. We dealt with
lots of bleeding and other problems before we met with Dr. Waner. I
know I personally wish that there was someone that I could have
talked to when we were dealing with this.

 

 


District of Columbia

Corinne Barinaga
VBF Director of Family Services
vbfadvocate@live.com
Snohomish, WA
My son was born in April 2004. A few days after we were home from the hospital we started seeing the segmental Hemangioma spread like wild fire across the right side of his face toward his eye. The Hemangioma is in the upper inner eye lid. The right side of his face is covered and some in his ear, and back of his neck. It took only two weeks for it to become dark red and start to thicken. He was on oral steroids from 6 weeks old to 4 1/2 months old. He started laser treatments at 4 months old and continues to have them every 8 weeks.

 

 

 

 

Florida

 

 

Carrie Doyle
Fort Lauderdale, FL
954-475-8627
Carrie's daughter has facial hemangiomas and is being treated by Dr. Waner.

 

 

Petra Larkins
Miami, FL
305-669-8417
Larkins@eng.flu.edu
Petra has a daughter with a hemangioma. Petra speaks German.

 

 

Dru DiMattia
Cape Coral, FL
941-945-2619
DdiMattia@aol.com
Dru has a facial port wine stain.

 

 

Anita Francis
Destin, Florida
850-650-1825
francadams@cox.net
Anita is the mother of a daughter, Danielle, who had a hemangioma between her eyes. It was removed by Dr. Waner in 1996, when Danielle was four years old.

 

 

Joanne Ault
Apopka, FL
407-814-6995
AultMom4J@aol.com
Daughter is Jaylee Ault 15 mths. She is currently going to have her 2nd surgery in April. She has/had an upper lip/nose hemangioma. We've received treatment at the Nemours Clinic in Orlando, Florida w/ the help of Dr. Waner who put Jaylee on Vin Cristin. She also did oral steroids (Orapred) & a few shots of Alpha Interferon.

 

 

Kate Shaughnessy & Ken Ciosek
Tampa, FL
813-264-6958
Daughter Julia had hemagioma on her nose and it was removed by Dr. Waner in 2000.

 

 

Marni Tamayo
Bartow, FL 33830
jmatamayo@aol.com
Daughter, Ava, now two years old, has a cavernous hemangioma on her let parotid gland. She was on steroid therapy for five months and will most likely have laser therapy or surgery to remove the remaining hemangioma.

 

 

Kathy Wyrick
Lake City, FL
email: chadsuzy@yahoo.com
Kathy is an adult with SWS.

Marina Marrari
marinam_ar@yahoo.com
St. Petersburg, FL 33713
daugher with eyelid hemangioma

 

 

Georgia

 

 

Gail Duren
Lawrenceville, GA
770-279-7474
jdruenjr@aol.com
Gail's daughter Laura has a facial hemangioma

 

 

Kristie Byrnes
St.Marys Georgia
isleskristie@tds.net
I have a VM throughout my left elbow/forearm. Have had one sclerotherapy treatment done by Dr.Yakes. Currently in physical therapy 2x week to regain strength in hand/elbow..

 

 


Hawaii

Corinne Barinaga
VBF Director of Family Services
vbfadvocate@live.com
Snohomish, WA
My son was born in April 2004. A few days after we were home from the hospital we started seeing the segmental Hemangioma spread like wild fire across the right side of his face toward his eye. The Hemangioma is in the upper inner eye lid. The right side of his face is covered and some in his ear, and back of his neck. It took only two weeks for it to become dark red and start to thicken. He was on oral steroids from 6 weeks old to 4 1/2 months old. He started laser treatments at 4 months old and continues to have them every 8 weeks.

 

 

 

 

Idaho

 

 

Corinne Barinaga
VBF Director of Family Services
vbfadvocate@live.com
Snohomish, WA

My son was born in April 2004. A few days after we were home from the hospital we started seeing the segmental Hemangioma spread like wild fire across the right side of his face toward his eye. The Hemangioma is in the upper inner eye lid. The right side of his face is covered and some in his ear, and back of his neck. It took only two weeks for it to become dark red and start to thicken. He was on oral steroids from 6 weeks old to 4 1/2 months old. He started laser treatments at 4 months old and continues to have them every 8 weeks.

 

 


Illinois

 

 

Mary Robbins
Kankakee, Il
Robbins6574@sbcglobal.com
(815) 530-7037

 

 

Indiana

David Cottengim
Indianapolis, IN 46038
(317)294-3520
david.cottengim@comcast.net
David has a vascular malformation on his tongue

 

 

 

 

Iowa

 

 

Anna Whipple
Des Moines, Iowa
anna.whipple@gmail.com
(515) 371-2303
My daughter has a port wine stain on her forehead, eye, and cheek. We began laser treatments in infancy and are also monitoring her for glaucoma.

 

Jill and Paul Brown
Grimes, IA
jilldalenb@hotmail.com
We have a daughter with a large hemangioma on the side of her head/neck/ear.

 

 

Amy Lyons
(563)349-8149
lye_66219@yahoo.com
Iowa
My daughter has a deep hemangioma on her right cheek/nose. It has responded very well to steroid injections and we have postponed surgery for the time being.

 

 

Amy Brody
abzb4@aol.com
Clive, IA 50325
Type of Birthmark: port wine
I was born with a port wine on the right half of my face. I am 47
yrs old and have had about 15 laser treatments. My birthmark is about 80%
faded. I am very happily married to a great man for 23 years and have 2
children. I would like to help in any way.

 

 


Kansas

 


Kentucky

 

 

John Pica
Winchester, KY
Phone: 859-744-4955
jpica@adelphia.net
Our daughter had a hemangioma on the nose (alar ridge), bith cutaneous and
subcutaneous. She had laser treatments through Dr. Waner and it was very
successful. We found him through Linda's book and website in 1998.

 

 

Tiffany and Glenda Ethington
Sturge-Weber Syndrome Community
Lexington, KY
859-272-3857
email: swsc@swscommunity.org
Tiffany's son has SWS/PWS.

 

 


Louisiana

 

 

Kerri Prevost
Independence, LA
(504)878-6617
Kerri has a daughter, Sadie, with massive facial hemangiomas.

 

 

Maine

 

 

Christine Riendeau
Durham, ME
criendeau@sochs.com
Has a child with a lip hemangioma

 

 


Maryland

 

 

Deborah Brown
Columbia, MD
(410)381-7155
dbrown@jhudis.dev.jhu.edu
Deb's neice had a massive hemangioma.

 

 

Sherry Arena
Forest Hill, MD
(410) 803-4887
sherrysbaskets@starpower.net
Daughter had massive facial hemangioma with 80% airway blockage. She has undergone 11 reconstructive surgeries with Dr. Waner.

 

 

Massachusetts

 

 

Krista Landsman
Walpole, MA
508.272.3887
krista.landsman@gmail.com
Our daughter had a hemangioma on center of forehead that protruded off of her skin significantly. We had it surgically removed at 10 months of age by Dr. Reinisch. We consulted other specialists and conducted much research independently prior to deciding on the surgery. We were told to 'wait and see' by Boston Children's Hospital, but decided removal was the best decision for our daughter. Our daughter took Tylenol twice after the surgery. Within 24 hours she was back to her self, not groggy, no pain. We can barely see her scar, and it has been only 4 months.

 

 

Pauline George
Roslindale, MA
617-325-5628

 

 

Natasha Rosenberg
natashajrosenberg@gmail.com
Daughter had hemangioma removed by Dr. Reinisch.

 

 

 

Karen Lipman RN
Ipswich, MA 01938
karenlipman@mac.com
An adult rep for children with Lymphatic Malformations.

 

 


Michigan

 

 

Michelle Greco
Wyoming, MI
616-249-0680
MGreco2660@CS.COM
Michelle is the mother of a little girl with a hemangioma and is also the
Administrator of the internet support group for parents of children with hemangiomas.

 

 

Cassandra Johnson
Berkley, MI 48072
248-545-0187
CJohnsonRN@comcast.net
I was diagnosed with hemangiomas at about 6 weeks old. My mother felt a lump on the side if my neck and took me to my pediatrician who subsequently determined what they were. The hemangiomas subsequently grew significantly and split my skin, resulting in ulcerations on my neck and cheeks. At the time, there was no treatment for hemagiomas, per my parents. Later, it was discovered that steroids shrunk hemangiomas and I was started on a high dose of Prednisone during the summer of 1968, at which time I was about a year and a half old. By that time, I also had a tracheostomy because the hemangiomas were restricting my airway. The hemangiomas shrunk a lot at first but I had some remaining over the next few years. However, these also fully resolved eventually. I had extensive scarring on the right side of my face and the front of my neck, extending up under my chin. I had two reconstructive procedures on the scars when I was a teenager, which eliminated a portion of the scars. I did not pursue further surgery for the remaining scars until I was 35 although I had laser treatments to an area on my right cheek, where there had been hemangiomas and dilated blood vessels remained. Since then, I've had two skin flaps done, after tissue expanders had been used to create tissue.

 

 

Todd & Lisa Wiseley
Northville, MI 48167
twiseley@aol.com
Our daughter had a hemangioma on her cheek the size of a quarter
shortly after birth. We had it surgically removed at age 2 and have
had no problems. We'd be happy to speak to other parents considering
surgery.

 

 


Minnesota

 

 

Maria Larson
Mankato, MN
507-387-3833
mglarson10@charter.net
Maria's daughter Elisabeth had a vascular birthmark between her eyes which was successfully removed by Dr. Waner at the age of six.

 

 

Julie Higgins
Braham, MN 55006
jshiggie@gmail.com
763-300-8098
Benjamin was born on Valentines Day 2002. He has several vascular/capillary malformations; a facial, scalp, and right hand PWS, 2 AVF's in his brain, and is being examined for what is thought to be multiple AVM's. Ben has SWS and possibly a second vascular syndrome characterized by multiple AVM's. Ben has regular laser treatments, and has undergone a successful coil embolization for one of his AVF's.

 

 

Faith Mathias
Minneapolis, MN
f.mm07@live.com
I am an adult woman who in early infancy (1959) suffered a large hemangioma in my throat (subglottal) and also on my face in what is called a "beard distrubution" pattern. I underwent a life-saving tracheotomy at that time and followed-up with many plastic surgeries through my childhood into my adulthood.
I then suffered a hemagiomaparacytoma brain tumor in February of 2006. This tumor is related to the one in infancy.
I would be pleased to be of support to anyone who relates to my story. I know very well what birthmarks can do to one's physical and emotional health. Thank you. Faith Mathias

 

 


Mississippi

 

 

Cindy Boolos
Vicksburg, MS
601-630-9838
Lawboo@yahoo.com

 

 


Missiouri

 

 

Elissa Rifkin
Clayton, Missouri
psyelectro@aol.com
My daughter was born with a nasal hemanagioma in Dec. 1989. She was left untreated until she was 11 years old. Since then she has received three laser treatments and will have corrective surgery this summer, by Dr. Milton Waner.

 

 

Ashley Slater
Springfeild, MO 65802
ashleyallen_slater@hotmail.com
Child with internal and external hemangioma of the head and eye. Rapid growth deep eye orbit hemangioma requiring early surgery intervention to prevent loss of sight in the eye.

 

 

Shelley Delamarter
hoveshelley@hotmail.com
Fort Leonard Wood, MO 65473
Venous Malformation
My ten year old son, Zachary, was born with what appeared to be a bruise on the left side of his face. At one and a half he was misdiagnosed with a hemangioma. Laser surgery was performed and left him permanently scarred. At three and a half years old his face started to grow, and he was finally diagnosed with a venous malformation. He is being treated by Dr. Buckmiller at Arkansas Children\'s Hospital. He has undergone numerous surgeries to include: laser treatments, sclerotherapy, scar revision, and had his first excision surgery in October 2008. To learn more about Zachary’s Journey you can visit his CaringBridge site at: www.caringbridge.org/visit/zacharyh

 

 


Montana

Nebraska

 

 

Nevada

 

 

Henry Bartenbach
Carson City, Nevada
775-841-7686
hankinnv@charter.net

 

 

Linda Lopez
linda_lopez@cox.net
Las Vegas,Nevada 89131

My daughter was born with a PWS on the left side of her face. Her doctors said that it would fade by six years old so I did not seek treatment until she was one year old when I saw a program on t.v. about PWS saying otherwise. She is now 4yrs old and has been undergoing laser surgery with Dr. Nelson at the Beckman Laser Institute in Irvine, Ca. and has had 18 treatments.

 

 




New Hampshire

 

Shannon
Manchester, NH
603-232-2903
hohen13@comcast.net
Three out of my four children have hemangiomas. My 5 year old daughter has an upper lip hemangioma. She was on oral steroids and also had surgery last year. My 2 year old daughter has one on her hand and received no treatment. Her twin sister has very small one on her arm.

 

 

New Jersey

 

 

Joyce Cubberly
Brick, NJ
609-426-6324

 

Jim Murphy
Hazlet,NJ
s0713934@monmouth.edu
732-865-1474
I was born in 1990 with a port wine stain on the left side of my face, I've been receiving laser treatments since I was 6 months old and I'm currently being treated by Dr. Geronemus in New York.

 

 

Hans Schneider
Bordentown, NJ
hans_schneider@hotmail.com

 

 

Jodi Dickinson
Bridgeton, NJ
ambershemangioma@yahoo.com

 

 

Cindi Schmitzer
Sparta, NJ 07871
psuschmitzer@embarqmail.com
My daughter Clair had an AVM on her lower lip, doctors told us nothing could be done. Dr. Waner performed surgery, she looks like a different child....we are still in awe.

 

 

Amy Solomon
East Windsor, NJ
amysol28@verizon.net
Our daughter, Danielle, was born in July 1996 with a very small red dot in the corner of her eye. It began to grow quickly, and by the time she was five weeks old, she could barely open her eye. After several months of steroid treatment and patching her good eye it began to shrink. She is now a beautiful 14 year old.

 

 




New Mexico

 

 

Maureen
Rio Rancho, NM 87124
505-453-7432
maureenormickey@msn.com

I am 28 with a VM between my lungs and ribs at about T-2 to T-5. I am being treated with Sclerotherapy October 12th in New York, by Dr. Berenstein and Dr. Burrows.

 

 


New York

 

 

Julie and Fred Gallo
Cohoes, NY
518-238-9032
fgallo@nycap.rr.com
Julie and Fred Gallo have a daughter with a hemangioma on her upper eyelid. She is currently being treated by Dr. Williams.

 

 

Ruth Vibert
Melrose, NY
518-663-5910
Her daughter had multiple tiny hemangiomas

 

 

Beth Schiffer Benedetti
Phone (212-233-6512)
Beth has a daughter with a hemangioma

 

 

Kim Latini
Nutley, NY
kim_latini@nas.adp.com
Her daughter has a nasal tip hemangioma

 

 

Sandy Collins
So. Byron, NY
716-548-7121
RNCollin6@aol.com
Sandy's daughter Hannah had massive facial hemangioma and an airway hemangioma. Sandy is a nurse and works at the Hemangioma clinic at Buffalo Children's Hospital with Dr. Linda Brodsky.

 

 

Margie Casetallana
Slingerlands, NY
518-464-0542
mcastellana@nysid.org

 

 

Carrie Newhart
Clifton Park, NY 12065
(518) 371- 0661
clnewhart@mindspring.com

 

 

Stacie Keener
N. Massapequa, NY 11758
516-454-9874
email: staykeen@optonline.net
Stacie's daughter, Haley had two hemangiomas: one on her forehead and one on her lip. Both were surgically removed by Dr. Waner.

 

 

Janene Rathje
ginimama4@verizon.net
Manorville, New York 11949
Type of Birthmark: left nasal/eye hemangioma
My son was born with a fast growing left nasal/eye hemangioma. I was told to wait by my pediatrian and ophthamologist. My intuition knew better and found my way to Dr. Waner. My insurance and ophthamologist fought me that the surgery wasn't necessary and too aggressive but in the end I won the war and my son is now fully recovered.


 

 

Amy & Jeremy Abramson
White Plains, NY 10603
JeremyAA@Aol.com
AmyAbramson@Aol.com

 

 

Elizabeth Lymber
elizabethlymber@hotmail.com
Holbrook, NY
I am a 24 year old female with KT Syndrome of the right lower extremity.

 

 

Shane Grant, PH.D
Buffalo, NY 14221
Geoshane@yahoo.com

 

 

North Carolina

 

 

Christi F. Morgan
High Point, NC 27262
christifmorgan@northstate.net
336-337-0887
Anna Kathryn Morgan
Our daughter developed what looked like a small mosquito bite in her left cheek at three weeks old. After a trip to the pediatrician and monthly visits to the Children's Hospital, the doctors could not agree on a diagnosis. As Kate turned one, we decided to take matters into our own hands. After several sleepless nights researching the internet, we found the Vascular Birthmark Foundation website and emailed Kate's story. Three days later our prayers were answered by Dr. Gregory Levitin. We later met and now at 18 mos. old are scheduled for surgery on Thursday, December 20th with Dr. Levitin and Dr. Milton Waner. High Point's Mayor has declared December 20th, 2007 "Anna Kathryn Morgan Day". All of our friends and family will be wearing the VBF bracelets in her honor on the day of her surgery! We hope to raise awareness and offer support to families in similar situations.

 

 

Karenina Grubb
Mocksville, NC 27025
e-mail: angelkisses@netzero.net
I am the mother of a two and a half year old little girl who has
multiple hemangiomas. She has had five laser surgeries two
reconstructive surgeries. All of the lip, chin, and both sides of her
face. The latest was January 2007. She still has a long road ahead of
her, but she is a strong little girl she has went through more than I
could ever imagine. She loves New York even though she has surgery she
continues to tell me, "Momma I want to go to New York to see Dr.
Waner."

 

 

Tara Johnson
Leland, NC
e-mail: hemangioma@earthlink.net

 

 

John and Debra Foley
Apex, NC
919 387 0984

 

 

Dawn H. Staney
Reidsville, NC
dawnesi@triad.rr.com

 

 

Jason and Stephanie Wilkes
Winston-Salem, NC
wilkeswetpaint@aol.com
Daughter has parotid gland hemangioma that is being treated by Dr. Sean Freeman in Charlotte, NC. First laser treatment was at 3 1/2 months of age.

 

 

Daniel Williams
Charlotte, NC 28269
danw1974@hotmail.com
Venous Malformation of my right hip that started to enlarge around the age
of 24. I had surgery on January 24, 2002 by a vascular surgeon who couldn't
differentiate between tumor and tissue. The surgeon only removed 603 grams
of the tumor. After another 2.5 years, I found Dr. Hochman on the VBF
website. He referred to Dr. John McFadden, also in Charleston, who removed
the 2.8 kg mass within my vascular birthmark in a 6 hour operation. The
tumor was almost the size of a basketball.

 

 

Heidi Ohl
Charlotte, NC
heidigohl@gmail.com
My son is 5 months old and has a hemangioma on the back of his head around the crown. I have decided to wait and see on this hemangioma.

 

 

Betsy Lamb
Charlotte, NC
elamb1@carolina.rr.com
My 2 1/2 year old son has a VM on his L side of his face and has had 4 surgeries so far with Dr. Waner.

 

Keith and Cindy Alley
Patient: Douglas Ray Alley
Salisbury, NC
douglasray@animagecaptured.com
Our Son Douglas Ray had Hemangioma in the Diaper Area that ran from front waist to back waist. It caused him a lot of grief and pain. We made 3 trips to NY for 2 laser treatments to help with his problems. Douglas Ray has also had Back surgery and 2 surgeries for Genital Deformaties.

 

North Dakota

 

 


Ohio

 

 

Matthew “Matt” Nole
Westerville, Ohio 43081
Matthew.Nole@gmail.com
I am an adult with KTS in my left leg and side. I have a port wine stain over 95% of my left leg and 70% of my back. I was an athlete in high school and college: Football, Wrestling, Baseball, and Volleyball. The extent of my treatment was minimal and consisted of exercise and compression therapy. Although exercise has become much less of my daily routine, I still use the compression therapy and elevation for relief.

 

 

Sarah McCollum
Madison, Ohio 44057
mccollum422@alltel.net
My son had a nasal tip hemangioma. He was on oral steroids for seven months, has had four laser treatments and two MRI's with general anesthesia. When the local doctors stopped wanting to treat and said that we should wait until school age to remove his hemangioma we decided to get other opinions. On April 26, 2006 he had his hemangioma removed by Dr. Milton Waner. We are very pleased with the results, and were amazed by how caring Dr. Waner is.

 

 

Jen Battistoni
Medina, Ohio 44256
bellabice@zoominternet.net
My son, Michael, was born in October 2003 with a Superficial Facial Hemangioma that covered the entire right side of his cheek. It went from directly under his eye, touching his nose, to the ear all the way down to the bottom of his face. His Doctor is Annette Wagner and she is located at Children's Memorial in Chicago, IL. We travel from Ohio yearly to see her. He has never required medicinal intervention, it has gone down naturally. His is a rare form of Hemangioma, it was fully developed in utero. Following his birth, it slowly decreased in size.

 

 


Oklahoma

 

 

Ashley Cameron
Lawton, OK
timandashley@sbcglobal.net

 

 


Oregon

 

 

Meegan Alexander
Philomath, Oregon
meegandee@comcast.net
541-908-9087
I'm 29 years old now. I was born with a segmental hemangioma covering my right arm and chest. I had high-output heart failure, infections, and had a surgery to release scarring across my chest. I'm currently seeing Dr. Dawn Seigel at OHSU for screening for missed problems. I'm not a medical expert, but would love to listen.

 

 

Seanette Smith
Siletz, OR
541-444-7546
rsmith@actionnet.net
Our daughter Alex was born with extensive venous malformations on the left side of her face, neck, mouth, and intracranial along with an extensive sinus pericranium. Alex has had 28 surgeries to date and is expected to have several more in AR with Dr. Waner and Dr. Berenstien in New York.

 

 

Corinne Barinaga
VBF Director of Family Services
vbfadvocate@live.com
Snohomish, WA
My son was born in April 2004. A few days after we were home from the hospital we started seeing the segmental Hemangioma spread like wild fire across the right side of his face toward his eye. The Hemangioma is in the upper inner eye lid. The right side of his face is covered and some in his ear, and back of his neck. It took only two weeks for it to become dark red and start to thicken. He was on oral steroids from 6 weeks old to 4 1/2 months old. He started laser treatments at 4 months old and continues to have them every 8 weeks.

 

 


Pennsylvania

 

 

Cindy Dougan
North East, Pa.
814-898-1054
CDouganHH@aol.com
Cindy is founder of Hemangioma Hope. Her daughter Jennifer had a nasal tip hemangioma.

 

 

Diane Kappas
Sewickley, Pa.
(412)749-6090

 

 

Roy & Laurie Clemens
Moon Township, Pa
724-457-2661
Son Ryan had hemangioma between nose and lip and had it removed by Dr. Waner.

 

 

Jessica Wallace-Sutzko
Dallas, Pa
jwsutzko@hotmail.com

 

 

Tara Grove
Carbondale, Pa 18407
grove_tara@yahoo.com
570-687-8123
My daughter Taylor had a lare hemangioma in her pariotid gland and had it removed at 18 months. She is now a healthy, happy eleven year old. We had been to many doctors and hospitals before finding Dr. Waner. Thanks to his knowlwdge and fast acting he saved her from becoming facially paralyzed.

 

 

Terri White
Uniontown, PA
whitesgoldens2@peoplepc.com
Daughter has a left cheek hemangioma.

 

 

Jennifer Shadle
Chambersburg, Pa
717-360-0415
jennjakes@comcast.net
I am the mother to a fantastic 3 year old boy named Jonah. Jonah was born with a port wine stain on the left side of his face and eyelid. He has currently had 8 pulse dye laser treatments, with wonderful results.

 

 

Cristy Tipton
catipton@comcast.net
Lebanon, PA 17042
I have a son with a hemangioma above his left eyebrow (size of
dime) and a daughter with a hemangioma on the left side of her belly
(1 1/2in). My son did have laser treatments from one of your
specialists on your web site. My daughter is doing the wait and see
approach.

 

 

Jan and Andrew Dreger
Springfield, PA
ajdreger4@aim.com

 

 

Rhode Island

 

 

Dereyth Dwyer
Coventry, RI 02816
401-828-4045
Dereyth's daughter Kayla had a hemangioma between her eyes.

 

 

South Carolina

 

 

Diane Hardy
Seneca, SC
864-882-9233
JamesHardy@mindspring.com
(child had a perianal (diaper area) hemangioma).

 

 

Michael & Jackie Burke,
Columbia SC
JBurketoo@aol.com
803-782-5904
Our daughter Abigail has a Venous Malformation on the lip and cheek area.

 

 

Jinny Wylie
Gaffney, SC
phone 864-487-1035
email mom2austinhunter@msn.com
son has pws / sws and vascular malformations.

 

South Dakota

 

Robin Houwman
Sioux Falls, SD 57105
robin@meierhenrylaw.com
Robin's daughter had a compound segmental hemangioma on the back of her neck that was surgically removed in August 2004. They tried steroids and laser treatments.

 

 

Jodie Kauer Mader
South Dakota
jmader@rap.midco.net
I have a facial birthmark and glaucoma in the
eye that is affected by the birthmark. I have had 48 laser
surgeries.

 

 


Tennessee

 

 

Gray and Sarah Fleming
Murfreesboro, TN
615-898-0847
TheFlemings@comcast.net
daughter had an ulcerated hemangioma in her diaper area. It was surgically removed.

 

 

Michael and Stephanie Smith
Lebanon, TN 37087
615-453-9780
We are the proud parents of beautiful twin girls. Lili, one of the twins, has multiple hemangiomas on her body. The largest is the one that is located on her "soft spot." It became noticable at about 2 weeks of age, and has grown to about the size of a large egg. She also has hemangiomas on her shoulder, back, leg, ankle, and foot. She will be receiving treatment this April. I would love to provide and information and support to other parents with children with multiple hemangiomas.

 

 

Tracey DeLong
Lavergne, TN
tracey.delong@comcast.net
My daughter Callie had her cheek hemangioma removed by Dr. Buckmiller in Little Rock Arkansas and you would never know that she ever had a birthmark! It is the best thing we ever did for our Callie!

 

 


Texas

 

 

Leigh Germann
Austin, TX
(512) 402-0224
leigh5@austin.rr.com

 

 

Jessica Berman
Dallas, Tx
jessica.berman.vbf@gmail.com
I have a vascular malformation of the tongue. I am currently being treated by Dr. Waner in NYC.

 

 

Jeanette and Glen Dillow
Cedar Hill, TX 75104
972-291-5738
dillows@tx.rr.com
Daughter, Lauren, age two at the time, had compound hemangioma, approx 2 in. in diameter between eyes. Removed by Dr. Milton Waner. One outpatient procedure, no complications.

 

 

Dana and Brent Hill
Santa Fe, Texas
832.274.2108
dana@petronellalawfirm.com
Daughter had two hemangiomas. One on the eyelid (removed at 3mths). The other one was on her forehead, very large, (removed at 18mths - by Dr. Marcello Hochman).

 

 

Melissa & Les Hurd
Bridge City, TX
ag96melissa@yahoo.com
409/540-0335
Melissa and Les’ daughter had a diaper-area hemangioma and an
eccentric anus.

 

 

Natalie Bolinger
Corinth, TX 76210
(940) 271-1800
thebolingers@charter.net
Nicole had a compound hemangioma on her right cheek and after an unsuccessful try and severe reaction to steroids, we had no other option than surgery. She underwent her 1st excision by Dr. Waner at 5 months old and the final one at 8 months. She is now 10 months old (4/2004) and looks awesome! The scar that runs down the side of her nose is almost unnoticeable.

 

 

Erin Jarratt
Texas
972-527-0642
planomom@verizon.net
My son was born with a facial PWS. At his birth his ped. told us that his birthmark was a storkbite and that it would go away on it's own by age 2. I kept questioning the dr. but she continue to tell us it was a stork bite. Around age 2 I took him to a dermatologist who diagnosed it as a PWS. We began treatments shortly after that with Dr. Jay Burns at Children's Medical Center of Dallas. My son has now had 9 laser treatments.

 

 


Utah

 

 

Vermont

 

 

Greg & Andrea Couture
Vermont State Representative
Burlington, VT 05401
802 660 8433
gcouture@together.net

 

 

Virginia

 

 

Kathleen Goddard
Ruther Glen, VA
804-448-0303
My daughter Jennifer was seen at the 2002 Clinic. Dr. Yee recommed her for embolization treatment at Johns Hopkins Hospital in Baltimore, MD. We have been trying to get help for 12 years. You have helped us.

 

 

Beth Eldridge
Vienna, VA
(703) 438-3738
buywithbk@aol.com
Son (11 mths) has nasal tip hemangioma and is being treated with oral steroids and laser. Also has port wine stain on his chest that is being treated with laser.

 

 

Tracy Wood
Sterling, VA
kimsqueen@aol.com
Large hemangioma at right ear and cheek area. Saw Dr. Waner and Dr. John Mulliken.

 

 

Laura Wigglesworth
703-443-0130
Lwigglesworth@gmail.com
Leesburg, VA
My daughter had a hemangioma next to her left eye. She started seeing Dr. Waner when she was 2 months old. She is almost 2 1/2 now. We have had 2 surgeries, a steroid injection and multiple laser treatments.

 

 

Mindy Long
(703)642-1311 or
mindyjensen@yahoo.com
My son had a compound hemangioma that first appeared when he was two weeks old. It continued to grow and when my son was three months old we had an initial consultation with Dr. Milton Waner at the Vascular Birthmark Institute. Dr. Waner advised us that the hemangioma was too large to respond to laser therapy and therefore would need to be removed surgically. Dr. Waner recommended waiting until my son was six months old so he would better tolerate anesthesia. At six months, Dr. Waner removed the hemangioma and my son is doing very well.

 

 

Washington

 

 

Corinne Barinaga
VBF Director of Family Services
vbfadvocate@live.com
Snohomish, WA
My son was born in April 2004. A few days after we were home from the hospital we started seeing the segmental Hemangioma spread like wild fire across the right side of his face toward his eye. The Hemangioma is in the upper inner eye lid. The right side of his face is covered and some in his ear, and back of his neck. It took only two weeks for it to become dark red and start to thicken. He was on oral steroids from 6 weeks old to 4 1/2 months old. He started laser treatments at 4 months old and continues to have them every 8 weeks.

 

 

Keith and Sandrine Bernstein
Vancouver, WA 98685
360-635-5352
kbshjhb@pacifier.com
Our daughter Celeste was born with a PWS on her cheek, neck and scalp. She just turned 5 and had her 17th laser treatment with Dr Nelson at the Beckman Laser institute in August.

 

 

Carol Kowalski
Manchester, WA
ckowalskigocougs@gmail.com
Our 4 year old daughter has an upper lip hemangioma.
She has had three surgeries this past year from Dr. Milton Waner. She is on
the road to recovery.

 

 


West Virginia

 

 

Debbie Harrison
Weston, WV
LiDebbie4596@aol.com
Daughter was born with PWS and has been receiving treatment since nine months of age.

 

 


Wisconsin

 

 

Barr Family
McFarland, WI
608-838-6516
kikabarr@yahoo.com.br
Daughter had hemangioma on the back of her neck which was the size of an orange. It was surgically removed in 1998.

 

 

Sandra Peters
Appleton, Wisconsin
tpeters4@new.rr.com
(920) 687-0119
Daughter Elizabeth had large hemangioma on neck which local physicians did not know how to treat. In February 2005, Dr. Waner performed surgery to repair the scar tissue and eliminate redness.

 

 


Wyoming

Nick and Lizzy Hede
Casper, WY 82604
lizzyh@bresnan.net
307-262-2154
Daughter has diaper area hemangioma that ulcerated; received laser treatment in 2010.

 

 


Outside of USA
Africa
Australia

 

 

Michelle Earney
kids1@hotkey.net.au

 

 

Katie Harmon
kpharmon@optusnet.com.au

Canada

 

 

Rhonda Spuzak
email: spuzak30@hotmail.com
Ontario, Canada
Rhonda's daughter Kenna has a hemangioma on the top of her head.

 

 


China
Costa Rica
East Indies
Guatemala
Greenland
Iceland
India
Japan
Mexico
Middle East
New Zealand
Philippines

Ace Elgar
Elgy@pacific.net.ph

 

 


Russia
South America
West Indies
Europe:


Kay Lewin
dl014z9014@blueyonder.co.uk

 

 

Caroline Beelen - van den Bosch
the Netherlands
+31 252 41 41 99
Almost 2 year old son developed extensive hemangioma on trunk, surrounding left chest/back and left arm. He is treated 24/7 with a pressure suit. Suffered severe bleedings due to infected wounds, leading to blood transfusions. Now, relatively stable. Caroline is interested in establishing a network community in Europe for families affected by large hemangiomas.


 

Mr Soteris Christodoulou
London United Kingdom
sid3c@hotmail.com
I am a 48 year old British male with facial avm since birth and having researched my condition and undergone numerous treatments under numerous treatment centers I really would like to help advocate and be a resource for families affected by vascular birthmarks and tumors

 


 

 

Gemma Adams
Godmanchester, England
gem_adams01@hotmail.com
I have a son who is 4 with a venous malformation on his face. He has had 2 operations to date with more to follow in the near future.