Recap of BUSNA’s Successful Birdshot Day 2024!

We pulled it off!

Following four years of hoping and ten months of planning, Birdshot Uveitis Society of North America welcomed dozens of birdies and medical professionals to Philadelphia on April 6 for Birdshot Day 2024. Not only did we create memories; we also planted seeds that will grow into relevant research and improved treatments in the coming years.  

Birdshot Day started with a warm welcome from BUSNA President Christine Griffith. She spoke of the excitement of the BUSNA Board of Directors and Advisory Board members in hosting medical professionals, industry representatives, patients and partners for a day of learning and fellowship.

Dr. James P. Dunn, Director of the Uveitis Unit in the Retinal Division at Wills Eye Hospital, was the first featured presenter. He gave an overview of birdshot uveitis and spoke of the importance of measuring patient-reported outcomes. He is keen to work with BUSNA and the wider birdshot community in creating and compiling meaningful clinical measures with the diagnosis and treatment of birdshot uveitis. 

Dr. Dunn also shared the latest estimate that birdshot uveitis affects about 1 in 100,000 people. This represents a higher rate of frequency than many previous estimates, and we’ll surely be looking into this further. Could the disease be on the uptick? Or could efforts to diagnose this autoimmune disease be improving? 

Dr. Dunn also gave an overview of the history of birdshot uveitis research and clinical efforts to learn more about it. Look for a new blog in the coming weeks that will highlight this history and include his entire presentation!

Next up was Dr. Jennifer Thorne, the Cross Family Professor of Ophthalmology at the Wilmer Eye Institute of Johns Hopkins Hospital. Dr. Thorne spoke about the latest findings in several research studies that she is involved with, and she expressed optimism in both current and new areas of research. In an upcoming blog and video release, we will be able to share some parts of Dr. Thorne’s exciting presentation. 

Everyone then enjoyed a delicious lunch in the atrium. Boxed lunches had been prepared by Twelfth Street Catering.

Following the meal, attendees visited representatives of five organizations that provide low vision support, the latest technologies, and innovative pharmaceuticals. The booths of Alimera, Blind Institute of Technology, Eschenbach, Enhanced Vision, ORCAM, and VisionLink were brimming with helpful information as well as screens and gadgets that enable those with visual challenges to read all kinds of print media. Special thanks to the knowledgeable representatives who did a great job answering our questions!

Afternoon sessions began with a memorable presentation by Dr. Michael Baime of the University of Pennsylvania. He has worked in the field of mindfulness for close to fifty years. After making an effective case for the value of mindfulness in our lives, he led a 20-minute meditation that left each of us calm and relaxed. When we share Dr. Baime’s presentation on video, be sure and take a few minutes to join in on the exercise! 

Vanessa Zinke, LCSW and founder of Reaching Resilience Therapy in New York City, then led a panel discussion on strategies that can help us manage our day-to-day challenges. Many thanks to Melissa Sharpe and Ora Elber for serving on the panel and sharing their tips and perspectives. We each seem to have different protocols and experiences, and it helps to catch a glimpse into other birdshot journeys. 

Dr. Ranjoo Prasad, an optometrist specializing in Low Vision Rehabilitation at Wills Eye Hospital, gave a comprehensive overview of the many community resources that are available to assist those experiencing low vision. You wouldn’t believe what’s available! Be sure to look for her list of resources in an upcoming BUSNA blog. 

The next presentation was given by Sharon Graham from the Centers for Medicare & Medicaid Services. Not only did her talk cover everything you need to know about signing up for Medicare; it also included suggestions for dealing with issues that might come up in processing claims. Ms. Graham provided the Medicare codes that are specific to birdshot uveitis. This was a very pertinent presentation for the many American birdshot patients in attendance.

During Ms. Graham’s presentation, Canadian birdies enjoyed their own breakout session and a cup of herbal tea. Three Canadian provinces – Ontario, British Columbia in the west, and Newfoundland & Labrador in the east, were represented at Birdshot Day 2024. 

We then heard from Annie Folkard, Co-founder & Director of Birdshot Uveitis Society (UK), who spoke of the critical importance of our organizations and of the friendship we share.  Annie was very helpful to us as we formed BUSNA, and she spoke of her confidence that the future will bring additional opportunities for meaningful collaboration. Annie donated two of her remarkable handmade quilts to BSD24. She was on hand when Martie and Harper Peck became the lucky winners of both!

Our next presentation was led by Susan Pfaff, leader of the Seeing Eye Puppy Raising Club of Bucks County, Pennsylvania. We met five puppies and their handlers. We learned about the puppy raising program which is the beginning stage for these specially trained dogs who will become guide dogs for the blind and visually impaired. 

The group instructs the puppies from 7 weeks old to about 14 months in basic house manners and commands while also introducing them to diverse social scenarios and experiences. The puppies then return to Morristown for their formal training. 

While most of us will never need a guide dog, we enjoyed learning a small part of all the work and training that goes into developing these amazing animals. 

Drawings took place at the end of the day. Whether it was a Birdshot Day 2024 t-shirt or one of the many door prizes, participants went home happy and more knowledgeable about birdshot uveitis. 

A warm thank you to one of our attendees who later wrote, “Thank you so much for an amazing weekend! Truly uplifting, informative, warm, and perfectly executed.” 

There are many people to thank for making Birdshot Day 2024 the remarkable day that it was. Special thanks to Wills Eye Hospital for donating the use of their beautiful auditorium and atrium, and to Jack Scully, Director of Media Technology Services at Wills, who donated his services and recorded the entire day’s presentations. Thank you to the amazing speakers who educated us on our rare disease, and to the representatives who introduced their helpful products and services. And thank you to the generous Advisory Board members, sponsors and individuals who helped make it all happen. 

Finally, a warm thank you to each person who attended, whether from around the corner or from far away. All four corners of the continent were represented! 

Linda Berdine, of BUSNA’s Advisory Board, wrote that she looks forward to continuing to support our work in the future. Several presenters and other participants have vowed the same.

It seems we gathered an abundance of encouragement at Birdshot Day 2024, and our momentum will surely grow to bring about improvements in all aspects of our birdshot journeys!