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)

 

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
Alaska
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

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

Debra Brown
dbrown@jhudis.dev.jhu.edu
Deb's niece lived in South Africa and had massive hemangiomas of the head and neck area.

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.

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
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

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.

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
Idaho

Corinne Barinaga
Vancouver, WA
360-944-3193
rinner@comcast.net

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

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.

Kansas

Sherri Foster
Kansas City, MO
816/361-1188 (home)
My daughter was born with a segmental hemangioma. It was on her forehead and eyelid, her nose, the side of her head (including her ear) with an ulceration and inside her throat. She was in pain and certain for scaring and disfigurement. We refused to listen to the "experts" in Kansas City and chose to seek treatment with Dr. Waner in New York. We are so excited about her progress and wish to share our experience with any parent that we can help. We've been there - in the desperation and the fear and we understand.

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

Pauline George
Roslindale, MA
617-325-5628

Natasha Rosenberg
natashajrosenberg@gmail.com
Daughter had hemangioma removed by Dr. Reinisch. The Rosenberg's Insurance Appeal Letter
is a feature of our site. The Rosenbergs won their appeal!

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
O ur 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
glarson1@hickorytech.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.

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.

Sherri Foster
Kansas City, MO
816/361-1188 (home)
My daughter was born with a segmental hemangioma. It was on her forehead and eyelid, her nose, the side of her head (including her ear) with an ulceration and inside her throat. She was in pain and certain for scaring and disfigurement. We refused to listen to the "experts" in Kansas City and chose to seek treatment with Dr. Waner in New York. We are so excited about her progress and wish to share our experience with any parent that we can help. We've been there - in the desperation and the fear and we understand.

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.

Montana
Nebraska
Nevada

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


New Hampshire
New Jersey

Joyce Cubberly
Brick, NJ
609-426-6324

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. Doctor Waner performed surgery, she looks like a different child....we are still in awe.

Amy Solomon
East Windsor, NJ
amysol@comcast.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 month of steroid treatment and patching her good eye it began to shrink. She is now a beautiful 10 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.

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.

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 Devan McCollum 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 Devan 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
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
Vancouver, WA
360-944-3193
rinner@comcast.net

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

Eric and Tara Emiliani
Carbondale, Pa 18407
570-282-2688
chucky110@verizon.net
The Emiliani's have a daughter who had a large parotid hemangioma that was surgically removed by Dr. Waner. She had also been on oral steroids.

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

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.

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@digisoft77.com
Baby daughter with a cheek hemangioma is scheduled for surgery in August.

Texas

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

Jeanette and Glen Dillow
Cedar Hill, TX 75104
972-291-5738
dillows@comcast.net
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.

Jessica Berman
Lewisville, TX 75077
jberman88@hotmail.com
972-841-9518
I have a vascular malformation of the tongue. I am currently being treated
by Dr. Waner in NYC.

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
Vancouver, WA
360-944-3193
rinner@comcast.net
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

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

Mrs. Candace Butler
North Finchley
London N128DB
England
020 844 69779
c.b.butler@mdx.ac.uk
Parent of child with hemangioma

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.