The AVF Executive Committee and AVF Board of Directors at VENOUS2023 in San Antonio, Texas (missing Joe Rafetto, AVF Vice President).

Front row: Lori Pounds, Recorder; Steve Elias, MD, Treasurer; Glenn Jacobowitz, MD, President; William Martson, MD, Past President; Ruth Bush, MD, JD, President-Elect; Faisal Aziz, MD, Research Councilor; Jose Diaz, MD, Director; Misaki Kiguchi, MD, Director. Back Row: Mikel Sadek, MD, Communications Councilor/Activist; Kathleen Ozsvath, MD, Membership Councilor; Mark Iafrati, MD, Secretary/Admin Council Chair; Maki Avgerinos, MD, Director; Alessandra Puggioni, MD, Education Councilor; Jorge Ulloa, MD, Director; Dan Monahan, MD, Past Education Councilor.

Beverley Chan, MD, past chair of AVF’s Patient Education Committee, along with Kim Gladman from Juzo Canada, hosted The Healthy Veins Book launch in Burlington, Ontario, on May 11.  The event was well attended by family physicians, small business owners in the vein and lymphedema industry, physiotherapists, and hospitalists—all who are in prime positions to use and recommend the book in their daily practice. Even one of the vascular surgeons in attendance was flipping through the book and said he learned something new after reading one quick chapter!

Dr Chan extended thanks to Jeff Mendola, AVF’s Director of Mission Advancement, who helped facilitate delivery of the books to ensure all the attendees had a signed copy. In the process of getting the books across the border into Canada, the border officer asked Dr Chan about the book and when learning the title, he said “That sounds very technical…are you a doctor?” She assured him the book was tailored for the general public and he waved her through.  Now he knows where he can learn more about healthy veins!

The event was a success in continuing to spread more knowledge about venous disease to other healthcare professionals and the public. Consider hosting a similar event for referral sources in your area. Click here to purchase your copy.

If you’d like to host an event in your city, contact [email protected]  for information about purchasing a bulk order of books.

Beverley Chan, MD, hosts launch of The Healthy Veins Book in Burlington, Ontario, Canada on May 11.  

Navigating a diagnosis like lymphedema is challenging for anyone; but for parents whose children are diagnosed with lymphedema, this can be an extremely difficult path.  When Brittany Williams received a diagnosis for her daughter, Brylan, she became aware immediately that there was not much information or support for parents who have children with lymphedema.  It often takes a while to even get the diagnosis, but once it’s made, the challenge continues.  Brittany has made helping parents and families who are caring for a child with lymphedema her mission.  She created Brylan’s Feat in 2018 to help parents and children find lymphedema treatment and get the garments their children need.  JOBST® answered Brittany’s call as the first corporate sponsor. This relationship has grown over the years, as has Brylan’s Feat.  Brylan’s Feat not only supports children and families in the United States, but now is helping children in 24 countries around the world.  

In 2019, Brittany Williams met Betty Westbrook, a certified lymphedema therapist who had a vision about a camp for kids with lymphedema. Camp Watchme is the first and only summer camp in North America (and opening this summer in the United Kingdom) for children with lymphedema. Each child is encouraged to bring a parent or caregiver to join them. Camp Watchme allows children to have the quintessential summer camp experience, meet other children with the same disease they have, learn more about lymphedema, and receive treatment from certified lymphedema therapists. Parents receive invaluable education and emotional support through group sessions and get to see their children thrive.  

 Betty and Brittany are inspirational in how much energy and love they poured into these endeavors. The stories from the parents and the campers are inspiring as well. For example, consider the story of a young boy who had never worn shorts because he was embarrassed to let others see his compression garment, who changed into shorts at the airport when he joined the group of campers all wearing similar attire.

 There are so many inspiring stories, and one is exemplary of the dedication that Brittany and Betty have toward these children.  A young boy from Ukraine has captured the hearts of everyone involved in helping him. With the onset of the global pandemic, getting treatment became difficult; however, his family also soon had to deal with a war breaking out in their country.  Having a child who requires care is challenging enough, but having to flee to another country amidst a war is a whole other story.  His parents were able to ensure he was getting what he needed to treat his lymphedema, even with a delay in a needed surgery.  With the help of Brylan’s Feat and JOBST®, his parents reached out to reorder garments for their son, and he received his garments in the UK.  This is one of so many stories of the dedicated efforts of Brylan’s Feat.  

Brylan’s Feat and Camp Watchme have grown quickly over the years and this summer there will be multiple camp sessions in the US plus the first in the UK. Dedicated therapists volunteer their time and talents during the camp to provide treatment, including several JOBST® Medical Advisors who are also lymphedema therapists.  Camp attendees get treatment twice a day and receive compression garments after the camp. Lifelong friendships are made during the camp.  These children and their parents become part of a community where they can get support, encouragement, and information. To get more information or how you can support this wonderful organization or Camp Watchme please visit www.brylansfeat.org 

The AVF has a long history as a leader in venous translational and clinic research.   Over the next newsletters expect important updates on grant funding mechanisms from our 4-grant portfolio, updates from our investigators, and more. Do you have something AVF-research related to share? Email us at [email protected].

Welcome New AVF Members

March and April 2023

Jeffrey Braxton United States

Aleksandra Jaworucka-Kaczorowska Poland

Mimi Lyang United States

Janice Marchak United States

Crystal McLeod Canada

Nicholas Palagonia United States

Nakul Rao United States

Oystein Rognerud Norway