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.
Family and Volunteer Events
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
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
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
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
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”.