BRONZE2023

VASCULAR BIRTHMARKS FOUNDATION INC

Latham, NY   |  www.birthmark.org

Mission

VBF provides support and informational resources for individuals affected by vascular birthmarks and their caregivers, and sponsors conferences, clinics, education, and relevant research.

Ruling year info

1999

President & Founder

Dr. Linda Rozell-Shannon PhD

Main address

Po Box 106

Latham, NY 12110 USA

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Formerly known as

Hemangioma and Vascular Birthmarks Foundation, Inc.

EIN

16-1515227

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

A Foundation in Vascular Anomalies Online Course

Join the ranks of physicians earning marketable micro-certification in this self-paced, online course on Vascular Anomalies. This accessible, affordable selection of modules customized to meet the knowledge needs of surgeons, radiologists, pathologists and dermatologists- features: Expert, up-to-date information, hundreds of clear images, these modules have been approved for AMA PRA Category 1 Credit(s).

Population(s) Served
Adults
People with diseases and illnesses

Along with its partners, VBF hosts its Annual Conference and Clinics in either Irvine, California or New York, New York in October. Patients and their families spend the morning in educational sessions addressing the latest updates on diagnosis and treatment led by a faculty of the world’s leading vascular birthmarks experts. In the afternoon, special sessions and family support groups are held in conjunction with one-on-one clinical appointments. The clinics for hemangiomas, port wine stains, vascular malformations, and syndromes associated with vascular birthmarks bring patients together with panels of renowned experts to receive a diagnosis and treatment plan that might otherwise be impossible to obtain. Orthodontal exams, dental exams (tentative), and laser treatments (tentative) are also planned.

Population(s) Served
Adults
People with diseases and illnesses

May is the INTERNATIONAL MONTH OF AWARENESS FOR VASCULAR BIRTHMARKS and May 15th is the official DAY OF AWARENESS (marked by a U.S. Congressional Resolution).

Every birthmark tells a story. If you, your child, family member, or a friend has been affected by a vascular birthmark, let others know how it impacted your life. In May and especially on May 15, people across the country and around the globe will be promoting acceptance of birthmarks and raising funds to bring those who need treatment together with the experts who can help them.

Population(s) Served
Adults

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our goals include networking families to appropriate treating physician/ physicians, promoting awareness and acceptance programs, providing expert forums for families and physicians to answer questions, sponsoring research and physician education, utilizing technology to implement initiatives and improve program services, managing foundation operations to insure compliance with best industry practices, promoting VBF's public image, and raising funds to achieve these program goals.

For the goal of networking families into treatment, strategies include: insuring families are given referral options, create a self-reporting
follow up portal, insuring that physicians are meeting families needs, establishing patient surveys, establishing electronic system to enter request and follow up, promoting acceptance and tolerance, establishing Global Ambassadors in every country and every state.

For the goal of promoting awareness and acceptance programs, strategies include posting stories of awareness, promoting awareness stories on publications, engaging Ambassadors to share their stories, recruiting more board members and committee members to fulfill mission and highlighting successful networking cases.

For the goal of providing expert forums for families and physicians to ask questions, strategies include insuring families get information from the appropriate expert, providing a process of due diligence regarding public information, providing a discussion forum for patients (VBF and Facebook), and providing a forum for expert physicians to give their knowledge to affected families (VBF Facebook Live).

For the goal of sponsoring research and physician education, strategies include updating key information pages on website, working with medical schools to update curriculums, participating with organizations (ISSVA, etc.), expanding iTEAM, and participating in international events.

For the goal of utilizing current technology to Implement initiatives and improve programs and services, strategies include easy access to current information, utilizing highest quality and latest technology, maintaining website updates on a weekly basis, maintaining Facebook and social media updates weekly, promoting “It’s a Vascular Birthmark” information card and other informational materials, and sharing stories of “profound statements” campaign.

For the goal of managing operations to ensure compliance, strategies include securely managing all equipment and electronic media containing confidential information, eliminating unauthorized access to VBF, improving system uptime, complying with international world wide web use standards, establishing tight internal controls through policies and committees, establishing an audit committee, move all VBF staff to use a vbf related gmail, etc. email, basic policy improvements, board trainings, and assigning SCORE mentors for key staff and board positions

For the goal of promoting VBF's public image, strategies include increasing partnerships with other similar organizations, reviewing possibilities for VBF to be listed on other websites and search engines, conducting annual review of PR media programs, and organizational partnerships.

For the goal of raising funds to achieve program goals, strategies include increasing participation in planning and implementing campaigns, increasing use of surveys to get family/physician feedback, providing training, and supporting individual fundraising.

We have accomplished creating a strategic plan & budget to achieve all our goals and assembling a strong, continuing VBF Board with elected leadership to govern our organization, mobilizing a team of professional consultants, accountants, volunteers, and board members into teams of corporate and board committees to inform all our goals and measure effectiveness in real time, receiving approval and funding to host our Annual Conferences receiving approval and funding for our mission trips, hiring full time and part-time staff to assist with communications efforts, nd planning and implementing campaign strategies.

Every year, we strive to support our Board and leadership with trainings, leverage consultants to help with compliance projects, launch our Month of Awareness Campaign, plan and implement improved informational materials, increase reach on social media and website, leveraging free Google Advertising, and planning, implementing, and executing our events, campaigns, and conferences to serve our non-profit public mission, all while prioritizing our patient advocates working one-on-one with families who need to be networked into treatment.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

VASCULAR BIRTHMARKS FOUNDATION INC
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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VASCULAR BIRTHMARKS FOUNDATION INC

Board of directors
as of 12/22/2023
SOURCE: Self-reported by organization
Board chair

Corinne Barinaga

Jeff Bergen

Glenda Ethington

Tiffany Ethington

Lauri Firstenberg

Dinah Gonzalez

Sharon Israel

Marvin Kalafer

Sarah Kenis

Michelle Lai

Debbie Lee

Jody Lee

Carla Mannix

Chelsea Vincent

Fatima Qudussi

Michelle Sario