The Vascular Birthmarks Foundation Dr. Linda Rozell-Shannon, PhD President and Founder

OUR MISSION

FROM OUR PRESIDENT / FOUNDER

To my VBF Family,

As we look back with perfect vision on our 25th YEAR OF HOPE, we are thrilled to show you all we’ve accomplished to support children and adults around the world with vascular birthmarks and to share some of our plans to continue the fight for care in our community.

In 2019, VBF celebrated its 25th year as the leading not-for-profit in the world serving families affected by hemangiomas, port-wine stains, malformations, Sturge-Weber Syndrome and other vascular birthmarks, tumors, and related syndromes.

Our VBF iTEAM (international team) has now been to Russia, India, Israel, Italy, and this past June returned from Greece.

Our “Put on Your Birthmark” and “Day of Awareness” campaigns were a huge social media success this year, with over 35,000 followers. Our Global Ambassador Program (GAP) is growing tremendously with over 200 Ambassadors providing the latest information and support to individuals around the world.

Our annual international family conference continues to be our core focus for both family and physician education. We were honored Dr. Stavros Tombris of the European Vascular Anomalies (EVA) Clinic in Greece as our 2019 VBF Physician of the Year for his commitment to providing international access. Over 75 families attended the conference, and we waived our registration fee for 43 families in need. Dr. J. Stuart Nelson and his team at the UC Irvine Beckman Laser Institute also provided free laser treatments to qualified individuals. VBF is still the only birthmark organization in the world to provide such a comprehensive slate of services at our annual conference.

We have big plans for 2020, our year of PERFECT VISION! We are excited to launch our 2020 Annual VBF Conference / Clinic in New York, New York with Dr. Robert J. Rosen and the Lenox Hill Hospital and Dr. Roy Geronemus of the Laser and Skin Surgery Center of New York. The VBF iTEAM also has plans to host national and international clinics and partnerships throughout the world.

I’d like to personally welcome every one of you to our VBF Family. Despite very recent advances, the 1 in 10 born with a vascular birthmark worldwide still do not have access to an early and accurate diagnosis and appropriate treatment plan, that saves lives. Without your help and support, VBF could not have grown over the past 25 years into the leading international charity in the world for those with vascular birthmarks. If you want to join us, please consider donating at www.birthmark.org/donate/.

Know that you are answering a mother’s prayers by supporting our mission, that your participation will allow us to continue to make a difference in the lives of each person around the world who needs our help and that your help will allow us to advance treatment that can change the lives of generations to come. Together, WE ARE MAKING A DIFFERENCE, one birthmark at a time.

CHANGING LIVES, ONE BIRTHMARK AT A TIME

The VBF Annual Conference and Clinic has always been about bringing together families affected by a vascular birthmark, anomaly, and/or associated syndrome with proper treatment specialists. It has also been about making “connections.”

The day after our 2019 Conference ended in Irvine, the VBF Business Operations Manager, Kristin Delgado had found a stuffed toy that she thought was important to a child and she wanted to make sure it was returned to the child. There were many children at the conference. We at VBF don’t believe in coincidences so when Kristin ran into the Streckfuss family, leaving the hotel to return back home to Arizona, she was ecstatic when their daughter Olivia beamed at her missing stuffed toy in Kristin’s hands. It was a joyous reunion.

The Streckfuss family began to share with Kristin their plans to go to Italy to have Dr. Giacomo Colletti, our VBF Italy Director, treat their daughter. Most of the treatments their daughter Oliva required (the one who was missing the stuffed animal) were temporary. Olivia was diagnosed with an intra-muscular venous malformation in her thigh. This caused severe pain and she would often end up in a wheelchair when the pain was unbearable.

The family has a tremendous support network back home and together everyone raised the money to fly the family to Italy for treatment with Dr. Colletti. The evening of the procedure, Dr. Colletti reported to us that the treatment, using several types of injectables, was a huge success. Within days, Olivia was out of the wheelchair, jumping and dancing. True stories, like this, are why we do what we do.

But, VBF didn’t just let the happy ending be the end. We are currently working with our team at UCI in California to bring Dr. Colletti to the states to train doctors in these life-changing procedures, such as the one he did for Olivia. We are also coordinating a plan for doctors from the US to travel to Italy to learn from Dr. Colletti.

CELEBRATING 25 YEARS: ANNUAL CONFERENCE

72 patients get an informal diagnosis and treatment plan at the 2019 annual international family conference.

Our 2019 Annual Conference and Clinic in Irvine, California with the Beckman Laser Institute provided free laser treatments, expert lectures tailored to families and individual clinic appointments with world-renowned experts in the field. Our comprehensive slate of services for families included psychotherapy support groups, professional make-up consultations, insurance support, and our brand new Birthmark Support Network that helped families share stories and make lasting connections.

We were thrilled to honor Dr. Stavros Tombris, of the European Vascular Anomalies Clinic as our 2019 VBF Physician of the Year for dedicating his career to putting the families first. Dr. Giacomo Colletti was also honored for the Michael Berns Achievement Award to recognize his contribution to research and treatment. The audience erupted in applause as Eileen O’Connor, a longtime member of our VBF family living with an AVM, was honored with the VBF Service award for donating her time as our professional photographer year-after-year for our conferences.

To ease the burden on families, who typically incur the cost of treatment for vascular birthmarks without any special assistance, we also offered free hotel rooms, breakfast, lunch and daycare for the whole family. We also waived our registration fee and granted free admission to 43 families to ensure that financial need was not a barrier that prevented anyone from accessing the services they need to make a fully informed decision about their treatment options.

Our team works hard all year long to raise the funds necessary to continue to offer these life-changing services at our conferences. Thanks to our sponsors, faculty, staff, volunteers and our Conference Co-Directors, Dr. J. Stuart Nelson and Dr. Martin C. Mihm, Jr. for making our conference services a reality for every individual with a vascular birthmark. Over the last 25 years, we have never turned a family away, and we won’t stop until every child and adult worldwide has an accurate diagnosis and appropriate treatment plan that can save lives.

2020 ANNUAL CONFERENCE

Our international family conference will return to the Lenox Hill Hospital in New York, New York on September 26, 2020, with exciting plans to continue our life-changing conference services like free laser treatment and clinic appointments, among all others, and to make this our farthest-reaching and most impactful event yet. For more information, click here.

AWARENESS THROUGH EDUCATION

Raising awareness through education is a vital part of our mission. As the conduit between the patients and medical providers, VBF provides educational resources for patients, families and medical providers alike. Dr. Linda leads the charge by working with our international network of medical providers and organizations worldwide to affect changes to treatment protocols, ensure that patient feedback is incorporated at all levels of decision-making and to provide direct training opportunities for providers worldwide through our VBF Educate Online Course and series of national and international conferences and clinics.

A GLOBAL ADVOCACY COMMUNITY

Over 100,000 reached in just one day for our VBF Day of Awareness for Vascular Birthmarks on May 15, igniting a global awareness movement.

A first step to change is to create a community. Staying at the forefront of social engagement trends has positioned VBF as the leading international medical charity in the world for serving those affected by all types of vascular birthmarks, anomalies, and syndromes. Our International VBF Day of Awareness for Vascular Birthmarks on May 15 and Month of Awareness in May has turned into a global movement, with participants worldwide sharing their stories and putting on their birthmarks to raise awareness for vascular birthmarks, and create an International patient advocacy network like no other.

Thank you to every single member of our VBF Family for raising awareness during our VBF Month of Awareness in May! Together, we reached over 100,000 in just one month. Your photos, stories, and advocacy help change lives. Let’s keep the momentum going to see how many more we can reach with our global movement in 2020!

 

207 registered VBF Global Ambassadors raise awareness in 37 countries, and 42 states.

The VBF Global Ambassador Program (GAP) saw tremendous growth and success in 2019, spreading awareness like never before. As the program moved into its second year, GAP Manager Scott Cupples doubled its size to 207 registered ambassadors, and almost tripled the number of members in the VBF GAP Facebook group to 590.

The second annual VBF Global Ambassador Month of Awareness in November provided a huge boost of activity to the Global Ambassador program, with dozens of Facebook Fundraisers and worldwide participation in weekly awareness challenges. Global Ambassadors also made possible our VBF Awareness Video series, including a “Spotlight on Vascular Birthmarks” segment that will air nationally in 2020 on PBS, reaching individuals worldwide with our message of acceptance and hope.

2020 will be another exciting year of growth for the GAP. In addition to VBF’s Month of Awareness in May and November’s Ambassador Awareness Month, we will launch a Virtual VBF Walk / Run Program for ambassadors in April, so that they can raise funds for VBF’s mission and mobilize a community of support like no other. We are so grateful for Scott Cupples’ leadership and to each and every Global Ambassador for leading the charge for VBF to spread awareness and help connect families with the care they need, as well as with each other.

INTERNATIONAL ACCESS: NO BIRTHMARK LEFT BEHIND

We take our commitment to turning no one away seriously. That’s why our international focus is so important. Universal access to experts, resources and treatment options for every member of our community world-wide is not yet a reality. We will not stop until we know that every person with a vascular birthmark has universal access to the treatment they need to live a full life.

The 2019 VBF iTEAM (international) Conference was held on June 7-8, 2019 in Athens, Greece. VBF, along with the European Vascular Anomalies (EVA) Clinic of Athens, joined forces to co-sponsor the conference, with Dr. Linda Rozell-Shannon, PhD, VBF President/Founder, and Dr. Stavros Tombris, EVA Clinic Director, as Conference Co-Chairs.

The focus of every VBF iTeam conference is to educate physicians from around the world regarding the latest information for accurately and appropriately diagnosing vascular birthmarks and anomalies in infants, children, and adults. This conference was no exception. Over 80 physicians were in attendance in Athens to learn from the elite VBF iTeam. Talks included the histopathology of vascular anomalies, genetics, classification, laser, psychosocial, radiology, surgery and staging systems.

In addition to these high-level talks, there was a free diagnostic clinic in which 36 patients were seen by the top vascular anomalies experts. We also provided 32 free laser therapy sessions, with patients ranging in age from infancy through adulthood. VBF is thankful to Candela, Dr. Roy G. Geronemus, and Dr. J. Stuart Nelson for making possible the free laser treatments for so many who otherwise would not have access.

To top off this spectacular conference, VBF hosted the first-ever Think Tank Session, facilitated by Dr. Linda, PhD. All attending physicians collaborated in a brainstorming session to identify key facts about vascular anomalies and to propose collaborative research projects, many that are currently in the works.

BIRTHMARK LEADERS MAKE A DIFFERENCE

Signature VBF Awareness events hosted by birthmark leaders across the country provide for our non-profit mission and raise awareness for our vascular birthmarks community. 2019 featured another fantastic golf outing hosted by a family who has never forgotten what it was like for their now teenaged daughter to have been born with a hemangioma, a fashion show hosted by an independent designer with an AVM who persevered through numerous treatments during the planning process to pull off a runway fashion event like no other, and a family that has amassed an army of support for their daughter and others who now rock their “purple polka dots” from laser treatment with confidence. We know that a connected community is an empowered one, and these are the leaders who are on the ground-level, devoting their lives to making a difference, one birthmark at a time.


Now in its 9th year, the FCF Golf Classic is an annual tradition, with celebrity guests, on-course vendors, dinner and not one, but two great golf courses. The Frank Catalanotto Foundation, lead by Frank, a former professional baseball player, is an organization dedicated to raising awareness and aiding with the early intervention of vascular birthmarks. Frank and Barbara Catalanotto, Honorary VBF Co-Chairs, started their foundation driven by love for their daughter Morgan, who was born with a hemangioma and networked into treatment by VBF. They continue their annual golf tradition every year to honor Morgan and remember all the new babies born each year who still struggle for access to care, having raised hundreds of thousands of dollars for our non-profit mission and transformed countless lives over the years.

Birthmark models rocked the runway at the 3rd Annual Wishlist by AM Fashion Show Fundraiser for VBF, with over 200 in attendance this past November. Ashley Mortensen, the creator of Wishlist by AM, is a fashion designer, affected by an AVM, who has raised thousands for VBF with her annual Fashion Show. Ashley also actively recruited models with vascular birthmarks from our pool of VBF Global Ambassadors in the area to rock the runway in her latest hand-cut and sewn fashions. Ashley’s tremendous success as a fashion designer at such a young age is an example for generations to come that even their wildest dreams are possible. Thanks to Ashley, Adrienne and their entire team, we can continue to change lives, one birthmark at a time, and make a difference for generations to come.



The 5th Annual Purple Polka Dot Race and Family Fund Run in Shelby Township, Michigan has a huge following of dedicated supporters – both virtual and in-person and is now one of the largest and most successful national events held to raise awareness and funds for vascular birthmarks. Jody Lee founded the PPDR in 2015 to honor her daughter, Meghana, who was born with a special birthmark called a port wine stain and networked into treatment by the VBF. Meghana receives laser treatments, which cause her to have temporary “purple polka dots” on her face and her mission is to raise awareness and encourage acceptance for all those out there who are also sporting their very own “purple polka dots”. The PPD team also hosts mini fundraising events throughout the year, such as Yoga & Brunch, PPD Paint Nights and Exercise Classes to continue the awareness tradition. Through their fundraising and advocacy efforts, Jody and her team have sponsored hundreds of families to attend our annual conference & clinic for free, changing the lives of countless individuals and harboring a community unlike any other. Jody is also a cherished member of our VBF Board of Directors. We are forever grateful to Jody, John, Meghana, Serena and the entire Purple Polka Dot Team for helping us change lives, one birthmark at a time!

FINANCIAL STATEMENT

Review VBF’s 2018 Tax Form 990.

VBF CHAMPIONS

In the past year, the Vascular Birthmarks Foundation has networked hundreds of families into treatment, provided information on its network of websites to thousands of visitors, developed conferences in the US and around the world, and held numerous Facebook Live sessions to connect patients with questions to experts with answers. We couldn’t have done it without the support of our VBF Champions!

VBF BOARD LEADERS

  • Dr. Linda Rozell-Shannon, PhD – President / Founder
  • Corinne Barinaga – Patient Advocate
  • Jeffery Bergen, MSN, RN – Officer
  • Natalie Bolinger
  • Brian Bolinger – Vice Chair
  • Jody Lee – Treasurer
  • Elizabeth Dishman, RN
  • Glenda Ethington
  • Tiffany Ethington – Secretary
  • Lauri Firstenberg
  • Dinah Gonzalez, MD
  • Sharon Israel
  • Marvin Kalafer, MD
  • Sarah Kathryn Kenis, RN II, BSN
  • Kim Lane, PhD
  • Carla Mannix
  • Sherry Parrish, RPh – Chair

VBF MEDICAL DIRECTORS

  • Martin C. Mihm Jr., MD –  Director of the Mihm Cutaneous Pathology Consultative Service through Brigham and Women’s Hospital
  • J. Stuart Nelson, MD, PhD –  Medical Director of the Beckman Laser Institute and Medical Clinic
  • Milton Waner, MD, BCh(Wits.), FCS(SA) –  Director of the Vascular Birthmark Institute at the Lenox Hill Hospital
  • Roy G. Geronemus, MD –  Director of the Laser & Skin Surgery Center of New York

 

INTERNATIONAL MEDICAL DIRECTORS

  • Giacomo Colletti, MD, DDS – Maxillo Facial Surgeon at the University of Milan San Paolo Hospital
  • Stavros Tombris, MD, PhD, DDS – Director of the European Vascular Anomalies Clinic

 

INTERNATIONAL MISSION TEAM DIRECTORS

  • Robert J. Rosen, MD –  Director of the AVM Center of New York at Lenox Hill Hospital
  • Stavros Tombris, MD, PhD, DDS –  Director of the European Vascular Anomalies Clinic

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