Every New Year, VBF launches a new theme. For 2021, I created the “More Than A Birthmark” campaign which asks our birthmarked community to share 3 things about themselves unrelated to their birthmark. I felt this was very important given the climate of COVID. VBF needed to focus on our community, but in a new way. This “new way” is now a permanent part of VBF. While we are dedicated to networking our affected individuals into treatment, as well as to both patient and physician education, we are now equally dedicated to learning more about our community. This new learning approach has resulted in many new research projects. We were quite busy in 2021. Here is a summary of research projects, new programs, and other initiatives:
Treatment Tracking App Project. This app will allow families to track either laser treatments or drug dosing via a mobile or desktop device. The design was completed in 2021 and we are hoping to get the app into testing before the end of 2022.
VBF Skin Project. This project began in 2021 and will be finished in 2022. This project team is assembling a list of skin products that are safe for our community as well as those products which should be avoided.
Beta Blocker Side Effects Study. We collected information from parents of babies treated with various versions of beta blockers to assess for side effects. We are still working on getting more participants in this study.
AVM Acute Stress Survey Study. This study assesses the impact of the diagnosis of an AVM on stress. We are currently analyzing this data and will publish results in 2022.
VBF COVID Part 2 Study. This study assessed if there was any change in a VBARS as a result of contracting COVID or as a result of getting vaccinated. We will be publishing these results in 2022.
VBF Lobbying Effort. VBF was selected by the leading lobby firm in the USA for a project. I wrote the legislation “The Treatment of Children’s Vascular Anomalies Act” and the lobby firm initiated a day on Capitol Hill. It was highly successful. We will continue this lobby effort in 2022.
Laser Guidelines Project. I initiated a joint project with ASLMS (leading laser society in the world) in order to create the first ever laser guidelines for physicians treating all types of vascular anomalies. This project will be ongoing until complete. In 2022 we will have a working meeting in Greece.
Free Laser Clinics. It was always my goal to have 6 free laser clinics each year. 2022 will realize this. However, in 2021, during COVID, we were able to have 3, which was a miracle. We had one in Italy, one in NYC, and one in Houston. For 2022, we are on track to host a minimum of 6 free laser clinics. We facilitated over 75 free laser treatments in 2021. We will exceed 100 free laser treatments in 2022.
Our Corporate relationships are getting stronger and stronger. I continue to work on research projects with Pierre Fabre (hemangiomas), Venthera (Venous Malformations), Palvella (Lymphatic Malformations) and Candela (lasers). During 2021, VBF was selected by Candela as a “Charity of the Month” and they highlighted us in their quarterly publication.
Despite COVID, we had a stellar year, financially, thanks to tried and true donors, as well as new donors and new outreach projects. Our finances are published online annually so that our donors can see the exciting things we are working on. We expanded our staff and added 2 amazing part-time employees. One is assisting in marketing and communications and the other is the VBF Executive Assistant. We are also looking into overhauling our website as we have had a year of nothing but troubleshooting. Since we are virtual, it is imperative to keep our technology current and operational.
The data has never changed. There are still 40,000 new babies born each year with a VBARS which require the opinion of a specialist. COVID will never change that. Therefore, we will never change. However, we have modified our delivery of services. We continue to have COVID-compliant, in-person events but we are also moving away from in-person talks. This may become a new norm for us. Our 2021 Super Clinic in NYC was a hybrid and it was an absolute success. Everything was held at Dr. Geronemus’s medical practice in NYC. It worked.
For 2022, we are back in California and will have another VBF Super Clinic. We are hopeful that things will be closer to normal by then. However, we are always prepared to meet the needs of our families despite a pandemic. Stay well. Stay safe. Stay sane.
Vascular Birthmarks Foundation 2021 Board Chair Annual Report
Reflecting on 2021, resilience was the theme for our board, staff and volunteers behind the scenes. More than ever, our community needed our services and we stepped up to meet those needs.
The VBF Board of Directors
Our board consists of members with diverse purposes, time and skills. The board uniquely contributes to the function and needs of the foundation, supporting the VBF’s mission. We often see shifting in our active board as life changes do happen. I would like to thank those that stepped away from their seats in 2021 for their service; they will always be part of our community and never too far away.
Executive Board Members 2021: Jody Lee (Vice President), Jeff Bergen (Community Relations), Tiffany Ethington (Secretary), Carla Mannix (Treasurer), Linda Rozell-Shannon, PhD (President). You are so appreciated for your dedication to making tough decisions, while planning and supporting the foundation’s needs. Thank you for your patience and support of the board chair.
Our executive board will see changes in 2022. We will forever be grateful to Tiffany Ethington for her lifelong dedication to VBF. For over 26 years, Tiffany has been our board secretary and a Sturge-Weber Syndrome (SWS) community leader. She has more than earned a gold star for her contributions over the years. Although she has opted to not continue as the secretary for 2022, we are thankful that she will continue as a general board member.
Our community has become our greatest asset in supporting the mission of VBF. Many VBF Global Ambassadors stepped up by being community advocates, raising awareness and funds, being available to work on VBF projects and volunteer at the Super Clinic. Scott Cupples directs an amazing team of our community dedicated to the VBF mission, inspiring the VBF Global Ambassadors to lead in all aspects of our community and foundation needs. This community will be the longevity of the foundation.
The board approved the hiring of the needed staff as the demand from our community has increased. We are so fortunate to have welcomed two new staff members in 2021, Gina Rothe as Project Associate and Christine Molluso as Executive Assistant. We appreciate their willingness to jump in and navigate the steep learning curve associated with a unique foundation.
Internal Affairs Committee
Finance Task Force researched and considered investment opportunities. A special thank you to the task force and specifically Debbie Lee for her vision, comprehensive research and authoring the impressive investment policy. The board approved the investment policy and approved funds available for investment.
Led by Jody Lee. Thank you to Jody for her patience and professionalism. The committee planned for the future of board membership and commitment agreements. We have a new form for board members to indicate their level of commitment to aid us in planning for 2022.
Conference Task Force
The majority of our board contributed to the specific tasks associated with the committees. Scholarship task force examined, voted and awarded 6 scholarships. The Global Ambassadors wore many hats; specifically, the ambassadors provided a major part of the VBF mission—consistent community support. The conference task force was limited to a few people due to COVID-19 restrictions; however, we were able to provide the successful Super Clinic in NYC thanks to our dedicated volunteers, staff and board members. The fundraising task force was added in 2021 and will be expanded and utilized in 2022. Thank you to our board members, staff and volunteers for all your financial contributions either directly or by fundraising on behalf of the VBF. We could not exist without this financial support.
Research and Education Committee
In 2021, we moved Research and Education from the internal affairs committee to a stand-alone committee. The Research and Education committee, led by Linda-Rozell-Shannon, PhD, consists of all projects VBF supports. This committee comprises 4 specific categories:
*See President and Founder report for more specific descriptions of the projects/programs of 2021.
The Parent Advocacy Network (PAN), a new program created in 2021, helps support the needs of parents navigating decisions and concerns in caring for and supporting children living with VBARS. We hosted 8 sessions this year with topics including Parental Stress, Sibling Dynamics, Explaining my Birthmark to Others, Ask the Adults with Birthmarks, Getting Your Child Ready for School, Accepting Your Decision on Treatment or Not, Navigating Sturge-Weber Syndrome, and more. We had approximately 120 people register for one or more of our sessions. This program will continue in 2022.
Thank you to Dr. Linda for her vision, her unwavering passion to change the world of vascular birthmarks, anomalies, and related syndromes. Thank you to all of our community for your continued support. Thank you to our incredible team of volunteers, board members and staff.
We are already planning 2022 and look forward to you all being part of this incredible mission.
Vascular Birthmarks Foundation, Board Chair
Director of Patient Advocacy
VBF was back at the Laser Skin & Surgery Center of New York on October 8 and 9 with Dr. Roy Geronemus, Joan Agnetti, and their amazing team for the VBF Super Clinic. Due to continuing COVID restrictions, we were unable to offer in-person conference talks, but we quickly pivoted in order to address the growing needs of our community members, many of whom had been unable to receive treatment in almost two years. Our Super Clinic was completely COVID-compliant with masks and either proof of vaccination or a negative COVID test; we even offered on-location COVID testing for those who wanted it.
On Friday, Oct. 8, Dr. Giacomo Colletti and Dr. Linda ran a new ultrasound clinic, giving new insight for those living with VBARS. Additionally, VBF held a dental and orthodontic clinic starting that day. Demand was so high that these services were also offered on Saturday, Oct. 9.
On Saturday, October 9, we hosted a team of medical experts including Dr. Milton Waner, Dr. Gregory Levitin, Dr. Roy Geronemus, Dr. J. Stuart Nelson, Dr. Bernard Cohen, Dr. Anne Comi, Dr. Francine Blei, Dr. Anna Pinto, Dr. Robert Rosen, Dr. Leonard Bernstein, Dr. Paul Friedman, Dr. Gerald Goldberg, Dr. David Darrow, WenBin Tan, Dr. Ana Duarte, Dr. Ricardo Restrepo, Dr. Kami Delfanian, Dr. Giacomo Colletti, and Leslie Graff at the Laser & Skin Surgery Center of New York. They worked together to see our families and give them accurate diagnoses and appropriate treatment plans. We were so proud to have:
All attendees received access to our virtual Conference/Clinic talks including new talks by Dr. Anne Comi and Dr. Kari Nelson with the latest information and research on VBARS.
Our 2022 Super Clinic is scheduled for October 8 in Irvine, California.
On Friday, July 16, VBF hosted a free laser clinic with Dr. Linda and Dr. Giacomo Colletti in Milan, Italy. The clinic hosted 20 patients from 13 countries and was completely COVID-compliant from 9 am in the morning into the evening hours. Dr. Colletti has made a commitment to VBF to host two free laser clinics a year in Europe to help serve those who are unable to receive treatment.
On Saturday, Dec. 4, Dr. Paul Friedman hosted VBF for a free laser clinic in Houston, Texas. VBF staff members Dr. Linda and Emily Lang traveled to the clinic to meet with 14 patients from two countries and 5 states. VBF is committed to ensuring every family receives an accurate diagnosis and appropriate treatment plan. For those who want laser treatment, they often face battles with insurance companies to cover those treatments. VBF is committed to ensuring families who want laser treatment can receive it, no matter their economic background.
Our community has grown to over 11,000 followers on Facebook. The VBF Facebook Live series continues to be one of the most important and accessible educational tools to fulfill our mission. Each month, Dr. Linda hosts a VBF expert for an hour and facilitates questions from viewers around the world.
This year, Dr. Linda hosted 13 VBF Facebook Lives, generating more than 19,000 views and reaching over 35,000 users. These videos serve as a resource for our community after their initial airing; our library of over 50 VBF Facebook Live videos continues to reach audiences looking for answers to their VBARS questions. Our videos have generated over 100,000 views.
At the Vascular Birthmarks Foundation, every day we deal with insurance denials for treatment of VBARS. Dr. Linda has been fighting for years to have all VBARS covered by insurance in all 50 states. In 2021, Dr. Linda worked with volunteers from The Denton Group lobbying fir to organize the VBF Day on Capitol Hill. VBF staff members gathered information from more than 100 individuals who had been denied treatment by their insurance and The Denton Group worked to identify their congressional representatives and organize Zoom meetings for families to testify about their experiences. On Tuesday, Sept. 28, Dr. Linda led families from 9 am to 5 pm with:
It was an incredible day and 27 years in the making. We cannot thank Dr. Linda enough for the hundreds of hours she put into this, and are grateful to the amazing team at The Denton Group who volunteered their time for this project. Our work to ensure legislation that covers all VBARS will continue into 2022. Interested in getting involved? Email Emily at email@example.com
May is the Vascular Birthmarks Foundation’s Month of Awareness (MoA); May 15 is the VBF International Day of Awareness (DoA) for Vascular Birthmarks, Anomalies, and Related Syndromes. This year’s DoA was on a Saturday, leading to new opportunities to bring awareness for VBARS.
VBF continued our #PutOnYourBirthmark campaign through email, videos, and social media. Each year, VBF encourages our community to share a photo of themselves or a loved one with a heart to raise awareness for vascular birthmarks, anomalies, and related syndromes on May 15. We had over 100 submissions from around the world this year.
The highlight of MoA was May 15, the International Day of Awareness for Vascular Birthmarks. The VBF Global Ambassador Virtual and Regional Meet Up committee hosted our most amazing Zoom call ever! Ava Pyles and Chelsea Vincent led the event, working with their committee to develop “Birthmark Bingo”- highlighting key vascular birthmark terms and phrases. The call engaged more than 80 people, and lasted more than 90 minutes. We look forward to celebrating our MoA in 2022!
In its fourth year of existence, the VBF Global Ambassador Program continues its mission to spread awareness about vascular birthmarks and the VBF message across the world. We now have representation from all 50 states and 39 countries. Our 300+ ambassadors are participating in all things ‘VBF’ from fundraising and awareness events, to volunteering at clinics and becoming board members! We forged another year of tremendous development, growing an average of 25% across all mediums (website registrations, Facebook, Instagram, and TikTok). Our private Facebook Group has representatives in 96 countries and all 50 states, totaling 1,141 members to-date. Our VBF Ambassador Instagram Page has over 1,000 total followers, and our TikTok videos have hundreds of thousands of views.
The program has been a great platform to connect the VBARS community not only with VBF, but with each other. From Dr. Linda’s original vision of the VBF Global Ambassador Program, we have pooled this talented group to become committee and board members of VBF.
Highlights from 2021:
The VBF Global Ambassador Council started as a small committee but is now an 11-person council with 5 sub-committees. The committees are Community Connection, Awareness & Fundraising, Networking & Recruitment, Anti-Bullying Ask/Accept, and Regional/Virtual Meet-ups. These committees meet bi-weekly and assist in spreading VBF news and information to the birthmark community. Members include Michelle Lai, Chelsea Vincent, Ava Pyles, Sarah Diaz, Eric Pixley, Amanda Byram, Alana Dolcemascolo, Isabella Swanson, Madelyn Solnikowski, Michelle Chiu and Emma Albert. This has been the biggest improvement of the program, allowing exponential growth and development of the future leaders of our community.
Through our council, we have done countless community engagement events spanning across all media platforms including:
While these highlights are tremendous, they are only a snapshot of what the VBF Global Ambassador community is doing. Every single day, our ambassadors are spreading awareness, connecting with each other, fundraising for VBF, and helping to spread awareness about the VBF. We look forward to what 2022 brings!
#MoreThan a Birthmark Campaign
In January 2021, VBF launched the #morethan a birthmark campaign to raise awareness in our community that we are #morethan our birthmarks. The campaign was launched with the following information:
YOU are MORE than your birthmark…
I am MORE than MY birthmark…
All Vascular Birthmarks, Anomalies, and Related Syndromes (VBARS) are like snowflakes; they are unique. But, what is even more unique is YOU. While no one can deny if they have a birthmark, the birthmark does not have to define them. YOU are MORE than your birthmark.
VBF launched the “More Than” project in 2021 so that we can learn about you. Are you a chef, a dancer, a teacher, a mother, a firefighter? Maybe you are a football player, a lawyer, a service worker, or a dog trainer. Maybe you are a beautiful newborn, entering a wonderful family. You could be a toddler who likes dinosaurs or a proud uncle. Everyone diagnosed with a VBARS, no matter what, is something more than their birthmark.
The “More Than” project is for you to share your or your child’s “More Than” facts with VBF and our birthmark community.
VBF asked parents or those living with a VBARS to email a photo of themselves, their birthmark type, and three non-birthmark related facts about themselves. That information was turned into a shareable graphic on social media.
VBF received over 150 submissions from 20 countries, representing all types of VBARS. As of December 2021, the campaign has garnered over 300,000 impressions on Facebook, Instagram, and Twitter.
One of our most successful posts was from Lindsay Shookus, a producer of Saturday Night Live. Dr. Linda and Emily met with Lindsay in January to explain what VBF is and what we do. Lindsay has a port wine stain on her leg that she had never publicly talked about. Lindsay decided to participate in the campaign, sharing her image and story in August 2021. The story and our campaign was picked up by Yahoo News!, The Daily Mail, Fox News, MSN, and more. The post garnered thousands of views and reshares on Instagram, Twitter, and Facebook.
This campaign was such a success, and it is being enhanced in 2022 with a video feature.
On August 2, 2021, the Frank Catalanotto Foundation hosted the 10th Annual Golf Outing at the Westbury Country Club on Long Island, New York. Over 100 golfers spent the day golfing, dining on New York staples, entering raffles for VBF, and learning about the Vascular Birthmarks Foundation. Barbara and Frank Catalanotto started the event in honor of their daughter Morgan who was networked into treatment by Dr. Linda. The event raised $30,000.
We cannot thank Barbara and Frank enough for their dedication to this amazing event over the last 11 years. We cannot wait to continue to work with them to host future events on Long Island!
2021 was the sixth year for the Purple Polka Dot Race, VBF’s signature Walk/Run event. VBF Board Member Jody Lee founded the Purple Polka Dot Race in 2015 to honor her daughter, Meghana, who was born with a Port Wine Stain birthmark. The race is one of the largest and most successful national events held to raise awareness and funds for VBF’s mission. The race took place on August 15, 2021 in Stony Creek, Michigan.
The 2021 PPDR included:
We cannot thank Jody Lee and her amazing PPDR team enough for their efforts this year. It was an amazing day to watch our community gather around the country to raise awareness for VBF.
On November 14, 2021 from 12-10 pm, VBF partnered for the second year with MagicalNewsLIVE! for a special fundraiser. Nick Antonelle of MagicalNewsLIVE! live streamed from Magic Kingdom Park at Walt Disney World Resort in Orlando, Florida. for a 10-hour marathon stream. His viewers donated $21,701 to VBF and included donations from 4 countries and 26 states.
Nick Antonelle was born with a Lymphatic Malformation and was networked into treatment through VBF over ten years ago. His father is a past member of the VBF board. Nick showed how a single teenager can make a huge difference to ensure every family receives an accurate diagnosis and appropriate treatment plan.
Thank you, Nick, for an incredible day.
Click here to view our financial statements from 2019 and 2020.
Click here to view our 2020 audit.
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