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


OUR MISSION

FROM OUR PRESIDENT / FOUNDER

Dear VBF families and friends,

While 2020 was a year of great uncertainty, VBF was certain about one thing: babies were born every day in 2020 with Vascular Birthmarks, Anomalies, and/or Related Syndromes (VBARS). These babies and their affected families needed us now more than ever, with most treatments put on hold due to the COVID-19 pandemic.

We held more hands (metaphorically) this year with more families than ever before. We hosted bi-weekly VBF Facebook Live sessions to keep families directly informed via our international expert team. VBF conducted numerous Zoom sessions for our families to connect with others facing the same issues. We also orchestrated art sessions on Facebook to ease the mental stress of the pandemic and to connect with others on a personal level.

We worked incredibly hard to make sure we could still safely host our annual clinic. On December 12 in NYC, our clinic featured multiple COVID tests (including an on-site rapid test), social distancing, and Zoom sessions with our doctors and experts. It was an incredible day that reminded us how important the work we do is for our families.

Our research did not stop. We created and published first Vascular Birthmarks, Anomalies, and/or Related Syndromes (VBARS) COVID-19 Study. We co-authored the AVM Staging System publication which will change treatment plans for patients around the world.

Our Global Ambassador Program expanded to over 800 ambassadors. They coordinated social sessions on Zoom, held Facebook/Instagram live sessions, and created new committees within the program to align the interests of our ambassadors with the needs of our community.

VBF is proud that we have stayed the course and held our own throughout 2020.

Our work is not over. 2020 marked over 120,000 patients networked into treatment, but we know that babies are born every day that will need our help. While 2020 was not a year of “perfect vision” for any of us, VBF will continue to keep its focus on getting families an accurate diagnosis and appropriate treatment plan.

Sincerely,

Dr. Linda Rozell-Shannon
VBF President/Founder

FROM OUR BOARD CHAIR

Dear VBF Community,

As the VBF staff and board planned for 2020, we created a theme of “Perfect Vision” for the year. Ironically, we could have never envisioned what was in store for us and for the world.

Despite so much uncertainty, our mission stayed on track as we weathered the storm. In fact, we saw a very significant demand for referrals, questions, support, and opportunities to connect with specialists. With increased time at home for internet research and alternative ways to “meet” the experts, people continued to connected with VBF staff and volunteers throughout the pandemic.

The VBF Board of Directors and volunteers wore many hats this year, filling in where we had increased need. They went the extra mile to keep our mission alive and VBF doors open. Our Global Ambassador Program scaled rapidly to meet the increased demand for support and connections. Having so much of our community using virtual platforms made it possible for Ambassadors to make valuable connections. Seeing the benefits and success of these programs, we plan to continue and increase these resources for 2021.

While our priority is to help individuals and families in our community, we also worked to strengthen the business operations of VBF. We restructured our committees and task forces to maximize our talent in all areas of managing VBF. I am happy to announce the addition of two new board members.

 It is my honor to introduce to you Chelsea Pentecost. Chelsea will serve on our Research and Education Committee and continue to expand our community outreach.  Her community outreach programs have significantly impacted the families and individuals wanting to connect and find support from others. Read more about Chelsea here.

I am also honored to welcome Fatima Quddusi, M.D. to our board of directors. Fatima was once a young girl in need of our resources and became inspired to become a doctor. Fatima will be a huge asset to us in the area of research and education. Please read more about Fatima here.

Thank you to all of our community for your continued support. Thank you to our incredible team of volunteers, board members, and staff. A huge thank you to Dr. Linda for her vision, and her unwavering passion to change the world of Vascular Birthmarks, Anomalies, and/or Related Syndromes. 

I am looking forward to 2021 and all the expanded and additional programs we have planned.  

Best Regards,

Corinne Barinaga
Vascular Birthmarks Foundation- Board Chair
Director of Patient Advocacy

ANNUAL CONFERENCE AND CLINIC

 

 

On December 12, 2020, VBF held its annual clinic at the Laser & Skin Surgery Center of New York. VBF was one of the only organizations in the country to hold a fully COVID-compliant medical clinic in 2020. We provided necessary treatments and consultations to 15 patients, many of whom had delays in their treatment plan due to COVID-19.

Patients were required to take a COVID test three days before their scheduled appointment and bring the results with them. All attendees were required to wear a mask. Laser & Skin Surgery Center of New York and VBF staff greeted patients, conducted an on-site screening, and brought them to a space for rapid COVID testing conducted by a affiliated company of Johns Hopkins.

After receiving negative results from the rapid test, patients were escorted upstairs where a team of experts (including Dr. Leonard Bernstein, Dr. Francine Blei, Dr. Giacomo Colletti (virtually), Dr. Chelsea Fidai, Dr. Roy Geronemus, Dr. Anne Comi (virtually), Dr. Gregory Levitin, Dr. Bob Rosen, Dr. Milton Waner, Dr. Jordan Wang, and Dr. Linda Rozell-Shannon) worked with each patient on a treatment plan and answered questions. 13 of these patients then received a free laser treatment.

The staff at the Laser & Skin Surgery Center of New York (including Joan Agnetti and Dr. Roy Geronemus) made sure the highest COVID complainant standards were conducted. Additionally, they went out of their way to make all patients and families feel comfortable and safe during this difficult time. We cannot thank them enough for their incredible work on this clinic.

While we were unable to host our in-person conference lectures, we worked with our medical experts over a period of two months to record and edit their lectures, creating a digital library. We gave access to these recordings to conference attendees and to anyone who made a donation in December 2020 to thank them for their continued support, providing the latest research and findings to our community.

 

VBF FACEBOOK LIVE

Our community has grown to over 10,000 followers on Facebook. The VBF Facebook Live series continues to be one of the most important and accessible educational tools to fulfil 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 14 VBF Facebook Lives, reaching over 27,000 views. These videos serve as a resource for our community after their initial airing; our library of over 40 VBF Facebook Live videos continues to reach audiences looking for answers to their VBARS questions. Our videos have reached almost 100,000 views.

Additionally, in the midst of the mental stress on our community during COVID-19, Dr. Linda embarked on a series of art tutorial videos. These videos provided an outlet for parents and children stuck at home to learn how to create art in a stress-free environment. It also served as a reminder to our community that we are more than a birthmark; we are artists, parents, children, sisters, brothers, and more.

 

COVID STUDY

In 2020, The Vascular Birthmarks Foundation (VBF)  initiated the first comprehensive Vascular Birthmarks, Anomalies, and/or Related Syndromes COVID-19 Impact Study. Click here to view the published study.

The VBF COVID-19 Impact Study was created by Dr. Linda Rozell-Shannon, Ph.D., and Duke University senior and incoming Icahn School of Medicine at Mount Sinai student Jasmine Leahy. Jasmine was completing her summer internship project with Duke; this study served to fulfill her internship requirements. Dr. Gregory Levitin, VBF Expert and Director of the Vascular Birthmark Center of New York, served as Medical Editor of the study. Dr. Giacomo Colletti, Director of VBF Europe, served as the Guest Editor.

Key take-aways from the study:

  • 61% of adults and 67% of caregivers said they experienced skipped, delayed, or canceled medical care for their or their child’s VBARS due to the pandemic.
  • 47% percent of adults and 32% of caregivers who experienced skipped, delayed, or cancelled medical care because of the pandemic reported that their or their child’s VBARS got worse as a result.
  • 25% and 10% of adults and children said the pandemic made their mental health, specifically regarding their VBARS, worse.
  • 35% of adults identified their facial appearance as the most profound effect of the pandemic, especially being able to cover their VBARS with a mask.
  • 73% of caregivers identified lack of access to care as the most profound effect of the COVID-19 pandemic.

 

 

AWARENESS THROUGH EDUCATION

Dr. Linda and Several VBF Medical Experts Published in New AVM Staging System Journal

AVM (arteriovenous malformations) are the most difficult to treat of all vascular anomalies. Dr. Linda refers to these lesions as “Arteriovenous Monsters” because most become lifelong nightmares for the affected individual as well as the family. 

Dr. Giacomo Colletti, VBF Italy and Europe Director, is the originator of a new staging system referred to as the SECg Staging System. This new staging system combines existing staging systems and adds additional data from Dr. Colletti’s years of experience in treating these lesions. 

The new staging system allows treatment specialists the ability to determine when to operate or not operate. This is the first time that a system has been created that will save many patients with AVM from countless surgeries. While the disease remains there, it has been observed that the initial appearance of an AV (which is not totally free of blemish) is much more acceptable than an AVM that has had repeated surgeries. Once treated, many AVMs, return with a vengeance and require an even more aggressive approach. For many families, this process has been traumatic. 

The new staging system is now in use and is available to view for free on the VBF website. Click here to view the PDF.

 

MONTH OF AWARENESS

May 15 is the VBF International Day of Awareness for Vascular Birthmarks, Anomalies, and /or Related Syndromes (VBARS). To honor this day, we have dedicated May as the Month of Awareness. This year, the website page for the Month of Awareness  (www.birthmark.org/awareness) was entirely redesigned to highlight the ways our community can spread awareness. Our theme was  “My Birthmark. My Story”; our community was encouraged to share their birthmark story or VBF story of hope. We created an entire social media campaign and our ambassadors spread these stories of hope around the globe.

Highlights from our Month of Awareness:

  •  Buddy Booby Read Aloud with Dr. Linda
  •  VBF Story of Hope Video: Meet Olivia
  •  #PutOnYourBirthmark + First appearance of the VBF “Smiley”
  •  Dr. Linda’s “Mother of Birthmarks” paintings / tote bags which raised hundreds of dollars for VBF
  •  Creation of the VBF Global Ambassadors Instagram
  • First VBF Ambassadors Instagram Live with Scott Cupples, Eric Pixley, and Dylan Horan
  •  Month of Awareness Special – Professional Learning Promo
  •  Month of awareness badge and ribbon graphics included within the corporate partner tool-kit

Through this campaign, we reached over 17,000 people on Facebook, over 12,000 people on Instagram, almost 2,000 on Twitter, and added dozens of new emails to our listserve. We brought our message of awareness and hope to a new audience and created a stronger community for those living with VBARS.

GLOBAL AMBASSADORS PROGRAM

The VBF Global Ambassador Program witnessed a year of growth like never before. The program has been a great platform to connect the VBARS community not only with VBF, but with each other. Dr. Linda’s vision of the VBF Global Ambassador Program being a way to pool talent has come to fruition, with committee and board members adding talent to our team. Highlights from 2020 include:

293 total registrations on www.birthmark.org/Ambassador, up from 196 since January. We have Ambassadors in 49 states and 33 countries!

900 members on the Global Ambassador Facebook group as of 12/31, an increase of 364 members in 2020 from 536. Outreach is an ongoing effort to have Facebook members register on the website and be active on social media sharing VBF news. However, members of the group who are not registered are also very active with Ambassador challenges and fundraising. 

Ambassador Month of Awareness in November each year has provided a huge increase of activity for the Global Ambassador Program. There have been dozens of Facebook fundraisers and large numbers of active participation in weekly challenges. 

Ambassador Council Zoom Meetings have given the Ambassador program a platform to organize and meet, which has sparked interest and led to stronger involvement. In 2020, we adapted to our virtual environment, creating Zoom meetings with 40-50 attendees per session and a stronger connection amongst the VBF Ambassador community. Twice, we collaborated with Chelsea’s Birthmark Social, adding to our following.

For the VBF Conference,  Scott modified the Ambassador Training Document into a virtual presentation and updated it with new programs and information. This module will also serve as a training module for our 2021 initiative, the VBF Global Ambassador Connectors.

In 2020, to utilize the skills of our Global Ambassadors, we created an Ambassador Survey to learn if they had a desire to help VBF. The survey asked several background questions and inquired if the member would like to be more active in their support of VBF. This survey resulted in the development of the VBF Global Ambassador Council.

The MOTIVATIONAL MONDAY videos have been a hit in the birthmark community. Started in August, these have been some of our top performing posts. Seeing videos of people within the community saying positive and inspirational things has been a huge boost to our network.

VBF Facebook posts we have shared have been a huge success, increasing overall awareness of VBF, and the Ambassador team has actively participated in sharing and creating (The Anti-Bullying Video, The PBS video, the Ambassador Awareness Project & countless awareness posts). We also created an VBF GA Instagram in 2020, and have more than 650 followers! 

The VBF Global Ambassador Council started as a 5-person committee, but is now a 10-person council with 5 sub-committees being filled by ambassador volunteers. The committees are Connector & Community Support, Awareness & Fundraising, Networking & Recruitment, Anti-Bullying Ask/Accept, and Regional/Virtual Meet-ups. These committees meet bi-weekly and assist spreading VBF news and information to the birthmark community. Members include Michelle Lai, Chelsea Pentecost, Chelsey Peat, Ava Pyles, Sarah Diaz, Eric Pixley, Amanda Byram, Alana Dolcemascolo, and Isabella Swanson. This has been the biggest improvement of the program, allowing exponential growth.

‘Ambassador of the Week’ posts have been a successful way to recruit new members and recognize registered Ambassadors. Our registrations are correlated with this post. Ambassadors receive monthly emails with VBF events and information to share in their networks.

FUNDRAISING

Purple Polka Dot Race

Purple Polka Dot Race

Despite challenges due to COVID-19, this year’s Purple Polka Dot Race (PPDR) had more attendees and raised more money than ever before. 2020 was the fifth year for the Purple Polka Dot Race, VBF’s signature Walk/Run event. 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.

Though originally planned to take place in two locations (Michigan and Ohio), the race quickly adapted due to gathering restrictions because of COVID-19. The PPDR launched itself in a completely virtual format this year, allowing participants from all of the country (and world) to create a team and help raise awareness for VBF.

The 2020 PPDR included:

  • Almost 700 athletes
  • 38 states – new in 2020: Maine, South Dakota, and Alaska
  • 3 countries – United States, Canada, and Ireland
  • Over $25,000 net raised
  • Weekly engagements with the Shine Bright Challenge: Over 100 people a week either commenting, participating, and/or “liking” posts 
  • A swag bag sent directly to participants home
  • Digital posters that highlighted each athlete with a PWS
  • Over 100 athletes for Team Beautifully Marked

We cannot thank Jody Lee and her amazing PPDR team enough for the efforts this year. It was an amazing day to watch our community gather around the country to raise awareness for VBF.

Magic is Giving

On November 7, 2020 from 1-7 pm, VBF  partnered with MagicalNewsLIVE! for a special fundraiser. Nick Antonelle of MagicNewsLIVE! livestreamed from Magic Kingdom Park at Walt Disney World Resort in Orlando, Florida for a 6-hour marathon stream. His viewers donated over $13,000 to VBF and included donations from 3 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 the importance of how a single teenager can make a huge difference. Nick explains, “The Magic is Giving Back event was filled with every emotion. We raised over $13,000, thanks to VBF and my audience. We love VBF.”

Thank you Nick for an incredible day.

VBF Fashion Week

Traditionally, VBF has held a VBF Fashion Show featuring models and fashion designs from our community organized by VBF Global Ambassador Ashley Mortenson. Because of social gathering limitations due to COVID-19, Ashley quickly pivoted her fundraiser. In 2020, VBF celebrated the first online VBF Fashion Week from November 30 to December 4. During the VBF Fashion Week, each day a different online business donated 10% or more of their proceeds to VBF. They included:

Monday, November 30 – Rize Boutique
www.rizeboutique.com
@rizeboutique
Tuesday, December 1 (Giving Tuesday) – Wishlist by Ashley Marion (a VBF Global Ambassador)
Wednesday, December 2 –  Kate’s Silver Hammer
Thursday, December 3 – Hello Port Wine Stain – Regan (VBF Global Ambassador)

Friday, December 4 – Dolce Designs
@dolcedesignsnj

VBF Fashion Week raised several hundred dollars, but more importantly brought awareness of VBARS to a new community. We cannot thank Ashley enough for this innovative digital fundraiser.

FINANCIAL STATEMENT

VBF BOARD LEADERS

  • Dr. Linda Rozell-Shannon, PhD – President/Founder
  • Corinne Barinaga – Patient Advocate/Chair
  • Jeffery Bergen, MSN, RN – Officer
  • Jody Lee – Vice Chair / Director of Walk/Run Events
  • Carla Mannix – Secretary
  • Elizabeth Dishman, RN
  • Glenda Ethington
  • Lauri Firstenberg
  • Dinah Gonzalez, MD
  • Sharon Israel
  • Marvin Kalafer, MD
  • Sarah Kathryn Kenis, RN II, BSN
  • Kim Lane, PhD
  • Debbie Lee
  • Michelle Lai
  • Chelsea Pentecost
  • Fatima Quddusi, M.D.

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

2020 IN NUMBERS

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