Vascular Birthmarks Foundation An international charitable ...


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Vascular Birthmarks Foundation An international charitable ...

  1. 1. Vascular BirthmarksVascular Birthmarks FoundationFoundation An international charitable organization that provides support and informational resources for individuals affected by hemangiomas, port wine stains, and other vascular birthmarks and tumors, sponsors relevant research and promotes physician education.
  2. 2. Founded in 1994 by Linda Rozell-Founded in 1994 by Linda Rozell- ShannonShannon  VBF was founded by Linda Rozell-Shannon in 1994 after her daughter Christine was diagnosed with a hemangioma and she found that there was no foundation, no website, no book and very few resources  Linda searched for a surgeon to remove Christine’s hemangioma and found Dr. Waner. Together they formed VBF and wrote the first book on the subject “Birthmarks: A Guide to Hemangiomas and Vascular Malformations”
  3. 3. October 1995 - First clinic establishedOctober 1995 - First clinic established at Albany Medical Centerat Albany Medical Center  Linda meets Dr. Martin Mihm at Albany Medical Center. Dr. Mihm joins the board of VBF.  Linda works with Dr. Mihm to establish the first multi- disciplinary treatment center for vascular birthmarks at Albany Medical Center.  Linda introduces Dr. Waner to Dr. Mihm and research on Vascular Birthmarks begins.  Dr. Mihm meets Dr. North in Arkansas, where Dr. Waner was from, and research becomes published.
  4. 4. 1996-Board of Directors Established1996-Board of Directors Established  Linda adds more doctors and parents of children with birthmarks to board  Name is officially changed from Hemangioma and Vascular Birthmarks Foundation to VBF.  501 C 3 papers are filed, making VBF official.  VBF networks an average of 50 individuals a month.  Over 40 letters are received weekly in the mail and over 25 phone calls per week are answered.  Numerous newspapers stories and television news features are done on VBF which launches VBF nationwide.
  5. 5. August 1996August 1996 foundedfounded  Linda takes off the summer and works with a friend to create the VBF website.  Linda begins work with Mike Steffano of the PWS group which later becomes  VBF receives it first donations as a charitable organization.  VBF receives hundreds of emails its first week, mainly from physicians seeking information.  VBF publishes a chart for physicians to assist them in how to diagnose a vascular birthmark.
  6. 6. Progression of HopeProgression of Hope 1997 2005 From a One Person Parent Support Group to an International Network of Families and Physicians
  7. 7. 19971997 VBF receives its official legal status as a not for profit – Formed Board of Directors – Established Second Treatment Center in Buffalo, New York – Networked over 1,000 Patients into Treatment – Linda attends and speaks at Hemangioma Hope Conference for families with birthmarks
  8. 8. 19981998 Solidified Operational Logistics – Issued Foundation Bylaws – Opened Foundation Office in Latham, NY – Established Third Treatment Center in Charleston, SC – Networked over 1,000 Patients into Treatment, bringing VBF to over 3,000 patients networked
  9. 9. 19991999 Positioning for Expanded Impact – Established Scientific Advisory Board – Held First Fundraising Gala – Established Fourth Treatment Center – Networked over 1,000 Patients into Treatment bringing new total to over 4,500 patients – Linda speaks at national conferences – Linda is first non-doctor invited to write a chapter in a medical textbook on vascular birthmarks.
  10. 10. 20002000  Staffed for Exponential Positive Impact – Sponsored Conference in Charleston SC – Addressed American Academy of Dermatology – Established Executive Director & Med. Advisory Board – Distributed First Newsletter – Established Fifth Treatment Center – Networked over 1,000 Patients into Treatment, totaling over 6,500 patients – Awarded “Best Pick” Website by Yahoo
  11. 11. 20012001  Accelerating the Pace – Featured on Discovery Channel Health Segment – Initiated Annual Polo Fund Raising Event – Distributed Medical Text to 500 Med Schools – Added Family & Physician Resource Lists – Established Sixth Treatment Center – Networked over a total of 8,000 cumulative _ Created “Ask the Doctor” Website Feature
  12. 12. 20022002  Fulfilling Our Mission – Funded Research and Physician Education Grant – Governor Pataki’s wife, Libby, Chairs VBF Polo Event – Cemented Annual Polo Fund Raising Event – Developed Professional Marketing Collateral – Addressed three Major Conferences – Established Seventh through Ninth Treatment Center – Networked over 10,000 Cumulative Patients into Treatment
  13. 13. Results…The First 7 YearsResults…The First 7 Years  Networked over ten thousand patients into treatment  Distributed Medical Text Books to US and Canadian Medical Schools  Established Nine Worldwide Treatment Centers  Facilitated Medical Research  Featured on Discovery Health Channel  Presented to The American Academy of Dermatology  Co-authors First Guide Book for Parents on Hemangiomas and Vascular Birthmarks.  Established Physician Education Program  Orchestrated Four Family/Physician Medical Conferences
  14. 14. 2003 VBF Grows and Grows2003 VBF Grows and Grows  VBF adds new chapters including Sturge Weber Syndrome Community Group  VBF Partners with Klippel Trenaunay Foundation  VBF adds Canadian Connection  VBF establishes Chapter in Israel  VBF assists in establishing 2 new treatment centers in the United States  VBF conducts second international Port Wine Stain Conference in NYC  VBF networks over 14,000 into treatment
  15. 15. 2004 – A Banner Year For VBF2004 – A Banner Year For VBF  VBF networks over 17,000 individuals into medical treatment worldwide  VBF establishes Orphans With Birthmarks  VBF establishes Artists With Birthmarks  VBF establishes First National Day of Awareness  VBF receives congressional resolution proclaiming May 15th as our Day of Awareness  Pro Golfer Casey Martin Chairs VBF Annual Event  VBF is recognized as leading not for profit for children and adults with birthmarks in the world
  16. 16. 2005 – VBF Continues To Grow2005 – VBF Continues To Grow  VBF adds VBF Europe as our European Chapter  VBF establishes Babies With Birthmarks Guidelines  VBF establishes “Ask the Expert” network  VBF attends NIH Conference on Vascular Birthmarks  VBF President and Founder receives Jefferson Award  VBF celebrates 2nd Annual Day of Awareness and expands to International Day of Awareness  VBF establishes VBF Kids Who Care Program  VBF networks over 20,000 into treatment worldwide  VBF President/Founder begins her doctorate program to develop curriculum on vascular birthmarks
  17. 17. Providing Hope…Providing Hope… “If not for this foundation, we would still be sitting and waiting in fear that today could be the last for Christian, now we have hope.” Sandy (Christian’s Grandma) “Before finding the VBF and its resources for finding proper care, we were at a loss. VBF gave us the contacts that no one else seemed to know about or understand.” Kate S. (Julia’s Mom)
  18. 18. 2005 and Beyond2005 and Beyond  Realizing the Vision……. – Establishment of many more Treatment Centers across the US and Worldwide – Babies With Birthmarks Guidelines established by major medical academies – Chapters established in Latin America, India and China – Increased Awareness & Accessibility to Options – Discover Cause of Birthmarks through Research – Legislation passed to require insurance companies to cover treatment of all children with birthmarks. – Curriculum developed through VBF President’s doctorate degree will become mandatory requirement for all primary care residents – No Child Will Remain Untreated!
  19. 19. Together we can make aTogether we can make a difference!difference!