May 2008


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.

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 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 Chapter Events

  • 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.