Bands for Birthmarks Photos

VBF Thanks Debbie Longtin (and her band Prolonged Exposure as well as bands What-ever! and T.R.O.U.B.L.E.) along with former NFL Player Tim Sherwin for volunteering their time and efforts for our first Bands for Birthmarks event. Additionally, VBF would like to thank the Polish Community Center for the use of their facility, all the volunteers, and our corporate sponsors.

Anna Joyce, with her mother, VBF Ex. Asst. Basia Joyce present one of the bands with their guitar plaque from VBF	Bouncey Bounce was a usual hit with all the kids.	Skittles the clown with Kristen, Christine Shannon (daughter of President/Founder Dr. Linda) and in the background is AJ Palmateer, our first Buddy Booby Costumer!
Here are all four clowns with Buddy Booby in full costume	Clown Eyes	Debbie Lontin (lead singer with Prolonged Exposure) and Band Coordinator shows plaque presented by VBF
Dr. Linda (with sunglasses) and the tall one is former NFL Player Tim Sherwin plus some VBF friends	One of the bands participating in this year's event	The kids line up for the Receiving Clinic with former NFL player Tim Sherwin (Giants/Colts)
Even the girls wanted in on the Receiving Clinic !	Jimmy Joyce (VBF Ex. Asst. Basia Joyce's son) receives a great pass from Tim Sherwin	Thank You to the Polish Community Center for the use of their facility for our event !

New Clinic Launched in NC

THANK YOU - LAX ART event raises over $4,000 for VBF

2nd Annual Walk/Run For Birthmarks A Huge Success

VBF – GOING FOR THE GOLD   May 15, 2010 will be our International Day of Awareness. This is the time of year where families all over the world tell their birthmark story and help us raise awareness and desperately needed funds.   VBF is throwing down the gauntlet! We are striving for a GOLD MEDAL in Fundraising Olympics in order to continue our operations. VBF needs to raise $25,000 by May 15th. We can’t do it without YOUR help. Our giving is the lowest it has been in our 16 year history, but our services are at their all time highest. We won’t compromise the services we provide to families all over the world but we can only continue our work with YOUR help. Make a donation today toward our GOLD MEDAL CHALLENGE of $25,000.   The thermometer will move up with each donation so that you can see our progress.   As the President and Founder of VBF, I am starting this challenge with the first 1% of the goal – a $250 donation. We are now 1% toward WINNING THE GOLD. Join me in this challenge so that VBF can continue the race that we run each day to get families affected by a vascular birthmark the correct diagnosis and an effective treatment plan. If 100 people gave $250 we would reach our goal, or if 200 people gave $125 we would reach our goal, or if 500 people gave $50 we would reach our goal. Even if 1,000 people gave $25 we would reach our goal. We have helped 40,000 families in 16 years to receive an accurate diagnosis and treatment plan. Now we need their help and your help in order to continue our mission.   VBF IS THANKING YOU IN ADVANCE FOR JOINING THE CHALLENGE and helping us to continue the valuable work that we do for families all over the world!   Click here to go for the gold NOW

VBF Launches 2nd Annual DOA Walk/Run for Birthmarks Challenge

VBF is excited to announce that our 2nd Annual Challenge - Walk/Run for Birthmarks - will be held on Friday, May 14th, 5:00pm, in Colonie, New York. Last year's event was a huge success with over 300 attendees. We are optimistic that we will succeed that total this year.

Evan before surgery	Evan after surgery	Evan today

Our 2010 Walk/Run event is sponsored by Mirkovic, Lambert & Teal, A Financial Advisory Practice of Ameriprise Financial Services, Inc. We are also proud to announce that our 2010 Birthmark Champion is Evan, a local child that was networked into treatment by VBF. Captions under pictures (Evan before surgery, after surgery, and today)

Please join our 5k race/walk teams. You can register on-line by going to the links below. This event is going to be a time of great family fun. We are going to have a bouncy bounce, tumbling tykes, face painting, music, food, and vascular birthmark "Experts" who will be on hand to answer questions for free about the diagnosis and treatment of hemangiomas and vascular malformations.

We are hoping for 25 "birthmark" teams to walk/run in this year's event. If you or a loved one has or had a vascular birthmark, put a team together and join us. Or, put a team together and run on behalf of someone you love who has or had a vascular birthmark. The 5k race course is a sanctioned course and certificates will be presented to the standard race category winners. We will also be presenting a certificate to the largest "birthmark" team.

Bring your friends, family, office, club, and classmates. Everyone is welcome. If you can't walk or run, volunteer to work at one of our booths. Please help us to continue to make a positive difference in the lives of families affected by a vascular birthmark.

REGISTER ON LINE HERE

DOWNLOAD and MAIL IN

VBF Mourns Loss of 1st Volunteer, Charlotte Shannon Gallo

pictured here is Charlotte Shannon Gallo, VBF's First Volunteer, and her granddaughter Christine Shannon at the VBF 2008 Gala in NYC

VBF mourns the loss of its loyal friend and first volunteer, Charlotte Shannon Gallo. Charlotte is the paternal grandmother of Christine Shannon, daughter of VBF President and Founder Dr. Linda Rozell-Shannon and is the mother of Charles Shannon, Christine's father.

Char (as Linda referred to her) helped stuff envelopes, sell raffle tickets, set up and clean up for every local VBF event since 1994. She received the VBF Service Award several years ago and also secured many corporate sponsors for annual fund raisers. Though Char is no longer with us, she continues to support VBF. Her obituary requests that donations may be made to VBF in her memory. She will be missed dearly by her family and her VBF friends. VBF extends its deepest and sincerest sympathy to Char's family and friends.

If you would like to make a donation in her memory follow this link:br>
https://birthmark.org/secure/donation.php

VBF and Proposed Health Care Plan

1) Position statement from various birthmark support groups
2) Sample letter for you to send to your political representatives

THANK YOU MICHAEL BOLTON for Charity Buzz event benefiting VBF!

VASCULAR BIRTHMARKS FOUNDATION AND
BECKMAN LASER INSTITUTE PRESENT LANDMARK CONFERENCE

The 2009 Port Wine Stain and Vascular Birthmarks Conference was VBF’s largest conference ever, with more than 300 attendees from around the world and 25 medical experts. The conference was co-sponsored by Dr. J. Stuart Nelson of the Beckman Laser Institute and VBF, a global foundation dedicated to helping families afflicted with vascular birthmarks, tumors or syndromes.

Anne Comi (VBF SWS Expert) and Mike Steffano, Founder of Birthmarks.com	Dr. Nelson is pictured with conference attendees

VBF’s Co-Medical Directors, Dr. Stuart Nelson and Dr. Martin Mihm, both presented ground breaking results from research. Dr. Mihm presented the results of a study concerning the histopathology of hemangiomas that gives promise to developing a drug that will prevent them from growing. Dr. Nelson presented preliminary results of great interest to individuals with port wine stains. The current study results provide hope for a new combination drug and laser therapy treatment that will remove port wine stains.

The day care was full with children with birthmarks. Jennie Legary, VBF Adult Rep and Director of Musicians with Birthmarks read the Buddy Booby Book. VBF Adult Rep, Danielle Vlahos, pictured in the front, coordinates the annual day care center	Children attending the conference were treated to face-painting by a clown

During the conference, other experts presented the latest findings on research, diagnoses, and treatments for vascular birthmarks and related syndromes. In addition to the conference, an informal clinic was held where over 100 appointments were scheduled and conducted by four different birthmark teams.

VBF Co-Medical Director Dr. Martin Mihm, VBF President & Founder Dr. Linda Rozell-Shannon, VBF Co-Medical Director and Conference Co-Sponsor Dr. Stuart Nelson, and VBF's newest board member (West Coast Liaison), Peggy Nelson	Christine Shannon (daughter of founder/president) and Jenny Legary (VBF Board Member and Director of Musicians with Birthmarks) sang for everyone at the Friday welcome reception

The Vascular Birthmarks Foundation celebrated its 15th anniversary at the conference. We continue to raise money all year to actually pay for the hotels and meals for families to attend the conference. VBF is the only birthmark organization that provides free lodging and meals and will also waive all clinic and conference fees to families who request a waiver based on hardship. Your donations to “Sponsor a Family” will continue to help us to be able to pay for families to attend our conference and get a free treatment plan.

VBF also honored Dr. Robert J. Rosen, Co-Director, Division of Peripheral and Endovascular Intervention at the Lenox Hill Heart and Vascular Institute in New York, as its Physician of the Year.

Next year’s conference and our bi-annual gala will be held in NYC on October 8-9, 2010. Dr. Roy Geronemus, of the Laser & Skin Surgery Center of New York will be the 2010 Mark of Beauty Gala and Vascular Birthmarks Conference Chair.

VBF's International Day of Awareness is May 15

It's never too late to register for VBF's International Day of Awareness. Our annual celebration for Awareness is on May 15, but events can be held at any time during the year. Click here to register now.

Abby Czirr Physician Education Grant

A Physician Education Grant has been established in Memory of Abby Czirr. The grant will be used to pay for the expenses of a physician to travel to a multidisciplinary treatment center to learn about the latest information in the diagnosis and treatment of vascular birthmarks and tumors. If you are a physician and you are interested in applying for this grant, please print the application and mail it to: Dr. Linda Rozell-Shannon, VBF President/Founder, PO Box 106, Latham, NY, 12110. Include your CV. Please also list the multidisciplinary treatment centers where you would like to visit and the dates you would like to visit. You will also need to provide a letter from the center's director agreeing to host you for the training period. At the current time, we have funding for one grant. A committee will select the recipient after 5 applications have been received and reviewed. All recipients will be notified of the award after the committee has selected the recipient. Those who are not selected will be encouraged to resubmit for the next grant cycle. Current grant cycle is January 1 - March 31 each year. Awards will be made in April. Travel will be expected to commence between April and October. For more information, contact Dr. Linda at hvbf@aol.com.

Download and print the application (pdf)
First Recipient of the VBF Abby Czirr Physician Education Grant Begins Studies with NYC Team

Non-Involuting Congenital Hemangiomas are not typical infantile hemangiomas. They are always present at birth and never regress, involute or shrink on their own. Therefore, it is important that parents know that these lesions must be removed or treated promptly, especially if they pose a threat to vision. See the series of pictures below which show the NICH in an ultrasound and even show the baby squishing the NICH and then pre op and post-op. The surgeries were done by Dr. Aaron Fay in Boston and a laser treatment was done in NYC with Dr. Fay and Dr. Waner. The baby's sight was saved and the ultrasound proved that these rare lesions are fully formed in utero.

See NICH over baby's right eyebrow	See NICH and how baby is squishing it with his hand (like saying "go away")	Baby before surgery that was done by Dr. Fay	Baby now after 2nd surgery by Dr. Fay and laser with Dr. Waner

VBF 1st Annual 1 mile walk and 5k run a huge success

(L to R) Christine Shannon, Dr. Linda Rozell-Shannon, Jimmy Joyce (son of VBF Ex. Asst. Basia Joyce), and Mike S. lead the parade of over 200 walkers in VBF's first ever Walk for Birthmarks	VBF's 1st Run Starts with over 100 runners	Team Anna (mother is Basia Joyce VBF's Ex. Asst and VBF Walk Director) wins award for largest team with over 50 walkers
Team Saige (VBF's student board member Saige Caveryo) and her Mom (Elysa Baron, also VBF Parent Rep) and their family come out to show a huge support for Saige	VBF's 2009 Birthmark Champion, Ethan Watson, has a huge support with Team Ethan	Another large team of walkers with Team Miller brings huge support for families of children with birthmarks
Winner of Ladies age group (wearing number 98) and VBF Run Director, Barbara Rothaupt	Three runners (out of over 100) lead the pack in VBF's first ever 5k Run for Birthmarks	Team Bauman - long time friends of VBF come out for support

Photos by Chris Milian of www.photosfromonhigh.com

Over 300 walkers/runners turned out for the event and over $10,000 was raised. Thank you all to everyone who made this event possible, especially Co-Event Directors Basia Joyce and Barbara Rothaupt. Also, thank you to our sponsors:

The Center for Facial Plastic Surgery & University Ear, Nose & Throat of Northeastern New York

and, CORPORATE SPONSORS:

A special thanks to the following businesses for their generous donations: Inferno Pizzeria, TGI Friday’s, Planet Fitness, Jeepers, CVS, Hoffman’s Playland, and Subway

VBF would also like to thank our PR firm 30Ink for the outstanding job of generating lots of PR coverage for this event.

Sign up to do a Day of Awareness Event (sign up from the Day of Awareness site)
Sponsor a Family (online)

Dreger Family Celebrates VBF Day of Awareness

Jan and Andrew Dreger, parents of Owen Dreger, along with JoAnn Campbell (Jan's mom/Owen's grandmother) had a multi-event VBF Day of Awareness celebration on May 15.

First, Owen's pre-school class participated in the "Buddy Booby Read-Along". His teacher, Mrs. Darla McNulty, made a puppet that resembled Buddy to entertain the class. Owen's mom, Jan Dreger, colored pictures of Buddy with the kids, along with bookmarks that they took home with them. Afterwards, Owen gave out VBF stickers to the kids. It was his "special day" because he was born with a special mark. The entire school was sent home with information about the VBF and about the Dreger's annual Day of Awareness event at their family's restaurant, Campbell's Boat House.

Next, at the St. Cornelius school where JoAnn Campbell teaches, her 6th grade class acted out the Buddy Booby book as a play. The kids did most of the production tasks, including casting, script, costumes, props, and sound. JoAnn assigned a producer and director, and they practiced all week and memorized their lines. The play was performed 4 times throughout the day on Friday, and all grades (pre-K to 8th) and teachers attended. Owen, his brother Austin, and mom Jan attended the last performance. After the play, the school presented the Dregers with two checks totaling $450.00 for VBF! The kids even asked Owen to sign autographs.

At 4 p.m. the Dregers opened the Boat House restaurant, and a steady stream of family, friends, and patrons filled the building all night. They had a wait list for 3 hours! Three families from the area came with their children who have birthmarks. The Dregers donate a portion of the proceeds from the night to VBF.
VBF would like to thank the Dregers for all their hard work, and for their outstanding efforts to raise funds and awareness for vascular birthmarks.

Please let us know about your Day of Awareness event. Send your event details and pictures to awareness@birthmark.org

Buddy Booby Read - Along

Join Evan and Donna Ducker in the "International Buddy Booby's Birthmark Read-Along for Tolerance and Awareness" on VBF Day of Awareness, May 15. The Ducker's also made a recent trip to Ireland, where they visited children with vascular birthmarks at Our Lady's Children's Hospital. With your help, they continue to "Make a Difference".

Visit the Buddy Booby website to register for this global event and to see the list of over 70 schools already registered: http://buddyboobysbirthmark.com/_wsn/page5.html

Bags for Birthmarks

To receive a bag with your donation, click here.

Bags for Birthmarks Information Sheet (pdf)

You can help to “Sponsor A Family” so that they can attend the VBF annual medical conference and receive a treatment plan. Donate a new or gently used high-end, vintage, or designer handbag or bid on one at www.birthmark.org. Both ways help! Tell your family, friends, or colleagues that they can help too by donating or bidding on a handbag

VBF Day of Awareness Events

VBF Board Members

• VBF Parent Rep Natalie and Treasurer Brian Bolinger – Texas, October 2009 – Silent Auction and Texas Hold ‘Em – Annual event and largest Day of Awareness fundraiser. Their daughter Nicole had a hemangioma.
• VBF Secretary/SWSC Co-Director - Tiffany Ethington and son Glen Ethington. Tiffany and Glen have an annual interview on noon news to raise awareness. Glen has Sturge-Weber syndrome/facial Port Wine Stain, and organized a newsletter and pen pal group for kids with birthmarks and their siblings/friends called “Glen’s Gang”. VBF Chapter Director/SWSC Co-founder Glenda Ethington also helped organize this annual event.
• VBF Executive Assistant Basia Joyce – VBF Walk/Run organizer. Basia’s daughter Anna had a hemangioma.
• VBF Director of Musicians with Birthmarks Jenny Legary – Jenny is putting on a show in NY. Jenny has port wine stain.
• VBF Parent Rep Danielle Vlahos – Each year Danielle hosts a “Jeans Day” at her workplace. Danielle’s son Cole had a hemangioma.
• VBF Parent Rep Lianne Chase – Team running in the VBF Walk/Run in NY. Lianne’s son Cody has a lymphatic malformation.
• VBF Legal - Barbara Rothaupt – VBF Walk/Run organizer
• VBF President Dr. Linda Shannon and daughter Christine Shannon – VBF Walk/Run organizer. Christine had a hemangioma on her lip and was the inspiration for the organization of VBF.
• VBF Parent Rep Elysa Baron and her daughter VBF Student Rep Saige Cavayero – Selling VBF Kids Who Care bracelets and organizing a team for the VBF Walk/Run. Saige was the inspiration for the bracelets. She designed them as a fundraiser for the first VBF Day of Awareness. Glen’s Gang and the VBF Kids Who Care program used Saige’s original design for adult bracelets and designed a blue/white swirl bracelet for children. Saige had extensive facial hemangioma.

• Donna Ducker and Evan Ducker – International Event - Buddy Booby Read-Along – Buddy Booby is the mascot for VBF. Mother and son authored the “Buddy Booby’s Birthmark” book about a booby bird with PWS. Evan Ducker has a facial PWS
• Lisa Burdick – Saegertown, PA Collection Box
• Allen Stotler – Sunrise, FL - Collection Box and VBF Starter Kits
• Arlin Diaz – Hopelawn, NJ - Collection Box
• Mike Jackson – Newton Centre, MA – VBF Starter kits
• Rita Jones - Grand Saline, TX - Collection Box
• Kate Steele – Dekalb, IL – Collection Box and VBF informational materials - In Honor of Aliyah Steele and VBF
• Karenina – Advance, NC - in Honor of daughter, Juliana Grubb – VBF informational materials
• Bianca Shemper – Hattiesburg, MS – VBF Stickers
• Kathy Wyrick – Lake City, FL – Article in local paper and informational pamphlets
• Jan and Andrew Dreger – 3rd annual Awareness Day Event at family
  owned/operated restaurant- Campbell's Boat House in Media, PA. Percentage of sales donated to VBF
• JoAnn Campbell – Media, PA - Buddy Booby Birthmark Read Along to students at St. Cornelius School. JoAnn is a teacher in Chadds Ford, PA. Also, video montage shown to students of grandson Owen Dreger.
• Rabbit Hill Nursery School – Springfield, PA - Buddy Booby Read Along to Owen Dreger's Pre-school class.
• Vanessa Beall – Aptos, CA – Collection Box – In honor of Lillie Nichols
• Christine Sylvester – Milwaukee, WI – postcard and sticker campaign to friends and family
• Kathleen Miller – Slingerlands, NY – Lunch and Learn, collection box – In honor of Camryn Shea Miller

• VBF Latin America - Andrea Domingues - São Paulo, Brazil - Medical Lecture – Each year Andrea hosts a meeting of People with Hemangioma and Linphangioma Brazil. The conference is organized by ABRAPHEL, a Brazilian association for people with Hemangioma and Lynphangioma. Andrea’s daughter, Gabrielle, has Proteus syndrome.
• VBF India - Santo Banerjee – Kolkata, West Bengal, India – Writing an article in the local newspaper. Santo’s son, Sumangal, has SWS.
• VBF Poland – Ewelina Ochab – plans pending
• Sturge-Weber Syndrome Community (SWSC) – Lexington, KY - Tiffany and Glen Ethington – Tiffany and Glen have an annual interview on noon news to raise awareness. Glen has SWS/PWS and organized a newsletter and pen pal group for kids with birthmarks and their siblings/friends called “Glen’s Gang”.
  • Glenda Ethington , SWSC – distributing informational pamphlets to local hospitals/doctors.

It's never too late to register for the 2009 VBF International Day of Awareness. Our annual celebration for Awareness is on May 15, but events can be held at any time during the year. Join these dedicated families in supporting VBF and raising awareness for vascular birthmarks. Visit the VBF Day of Awareness website today for more details and to register your event. With your help, we are making a difference!
http://birthmark.org/awareness

Anesthesia and Infants

Dr. Nelson and Dr. Geronemus Respond to Article on Anesthesia and Infants

An article recently appeared on the Internet which has caused a tremendous amount of anxiety for the parents of children receiving anesthesia in conjunction with laser surgery of vascular malformations. We would like the opportunity to comment on the article. (http://www.enotalone.com/article/19444.html)

Since the study was conducted during the period of 1976-1982, all children likely would have received halothane as the anesthetic agent. At our institutions, for all infants and young children we now exclusively use sevoflurane (introduced in the mid-1990's), which has a much faster on-set and off-set of anesthesia, as compared to halothane. Moreover, sevoflurane doesn't induce the overall global body beta blockade (such as slow heart rate), which was a major problem with halothane.

As pointed out by the authors, subjects included in the study had a variety of major medical illnesses requiring multiple complicated surgical procedures, which makes anesthesia much more problematic. The vast majority of our patients are essentially healthy. Patients with vascular malformations are only medically cleared for same day surgery procedures if they are medically stable, thus they are usually not categorized in the major medical illness category.

The degree of learning disability was most pronounced in those children undergoing procedures that lasted several hours. Our procedures are significantly shorter and only performed with an experienced anesthesia team.

Finally, and most importantly, the study predates the development and institution in 1984 of pulse oximetry and capnography which have made all anesthesia procedures much safer due to the ability to make real-time measurements of blood and lung concentrations of gases. Undetected brain hypoxia (lack of oxygen) was the most worrisome complication of anesthesia before pulse oximetry became standard practice. When children are put under anesthesia at our institutions we constantly monitor pulse oximetry. Any time the pulse oximeter goes below 90%, the laser procedure is stopped and our anesthesiologist replaces the mask and brings the pulse oximeter reading back up to 100%. Capnography, which measures the amount of carbon dioxide, is an important indicator of early broncho- or laryngo-spasm or other causes of inadequate ventilation or gas exchange by the lungs.

In conclusion, safer and shorter acting anesthetics, shorter time of procedures, treatment of a category of healthier patients and, most importantly, improved real-time monitoring, has significantly lowered the risk of complications from anesthesia. Without question, some of the most dramatic improvements in medicine have been in anesthesia in general, and pediatric anesthesia in particular. It was regrettable that it was not pointed out in the article that the anesthetic medications and technology used for most of the reported cases was more than 30 years old and now obsolete.

We would be happy to speak with you directly regarding children's individual case at your convenience.

Sincerely,

J. Stuart Nelson, M.D., Ph.D., Beckman Laser Institute, University of California, Irvine
Roy G. Geronemus, M.D., Laser & Skin Surgery Center of New York

VBF Abby Czirr Physician Education Grant

First Recipient of the VBF Abby Czirr Physician Education Grant Begins Studies with NYC Team

Pictured above (from left to right) are Dr. Aaron Fay (eye specialist), Dr. Milton Waner (world renown vascular birthmarks surgeon), Corey Tournay (Clinical Coordinator, Vascular Birthmark Institute of NY) and Dr. Arthur Falk (Abby Czirr Grant Recipient).

Sponsor a Family

Great Day of Awareness Goal- Sponsor a Family

Each year VBF organizes a conference where families can learn about the latest treatment in vascular birthmarks and tumors. They also receive a free night lodging and most meals are provided free of cost. If the family is unable to pay the $50 clinic and $50 conference fees, they are also waived. VBF pays approximately $500 for each family that attends our annual conference.
Send this sheet out and distribute to your friends so that they can also help to sponsor a family. (pdf)

Donate Now

VBF First Family Scholarship Awarded

VBF First Family Scholarship Awarded in Memory of Theresa M. Rozell - Dr. Linda's Mother - Who Passed Away Suddenly on 12-8-08

Read More Here

http://www.legacy.com/TimesUnion-Albany/Obituaries.asp?Page=Lifestory&PersonId=121239514

http://blogs.timesunion.com/tablehopping/?p=3247

http://www.youtube.com/watch?v=-D9Qg39MKR8