Awareness Month to focus on personal experiences, connections
The US-based Vasculitis Foundation is leading the way with several activities
Personal stories, community connections, and encouraging videos will be among the highlights as patients, doctors, researchers, and advocates recognize International Vasculitis Day on May 15 and the rest of Vasculitis Awareness Month.
Vasculitis is a group of rare autoimmune diseases characterized by inflammation and damage to blood vessels. Most cases of ANCA-associated vasculitis (AAV), where small blood vessels are affected, are associated with the production of self-reactive antibodies called ANCAs. AAV types include microscopic polyangiitis, granulomatosis with polyangiitis (GPA), and eosinophilic granulomatosis with polyangiitis (EGPA).
In recognition of Vasculitis Awareness Month, ANCA Vasculitis News is running “ANCA Vasculitis Community Spotlight,” a monthlong campaign that will feature articles that highlight the real-life experiences of people affected by vasculitis, written in their own words.
“By sharing their personal experiences publicly, community members forge connections and strengthen community ties as they advocate for greater awareness of this condition,” said Jessica Barrale Cao, director of social media at Bionews, which publishes this website.
In the first spotlight, “Navigating the complexities of GPA vasculitis in our marriage,” Cody Blagg shares his thoughts on the journey he and his wife, Jordyn, have taken since her diagnosis of GPA just six months into their marriage. Readers can follow the campaign throughout May on Facebook, Instagram, and X by using the hashtag #ANCASpotlight.
Vasculitis Foundation efforts
As in previous years, the U.S.-based Vasculitis Foundation, in collaboration with Amgen and Astrazeneca, is providing an easy, interactive calendar that’s filled with challenges for every day of May.
“This year we are focusing on the power of connections during VAM [Vasculitis Awareness Month], whether they be connections to the right doctors and medical facilities, connections to comprehensive education and resources, or to one another as patients and care partners,” Joyce A. Kullman, the foundation’s executive director, said in an email to ANCA Vasculitis News.
The foundation invites those with AAV to join the Vasculitis Patient-Powered Research Network, an international research network of people living with vasculitis, scientists, clinicians, advocates, family members.
This year’s Community Heroes campaign, which aims to “increase awareness of vasculitis to those outside of the vasculitis community while providing hope and inspiration to all,” as its website states, will feature seven videos throughout the month.
In the initial video, Erik Dodge, a competitive athlete who was diagnosed with GPA in 2020 and has connected with other athletes diagnosed with vasculitis, shares how he uses his platform to help spread awareness.
The foundation also invites patients to share their best tips for moving in VF Movement, its new Facebook group. Supporters are encouraged to share who they’d like to honor on May 6 and their personal story or any “Victory Over Vasculitis” they have experienced to date. “Tell us about your victories — from holding that new grandbaby to running a 5K — we want to celebrate those moments that bring you joy,” the survey form says.
For those seeking out others living with vasculitis, the foundation offers access to virtual support-group meetings, in which people affected by vasculitis can learn about the disease and connect with others in the community.
“The VF [Vasculitis Foundation] provides pathways for the vasculitis community to get what they need to live the best life possible,” Kullman said.
Support through donations is always welcome, but gifts made on on May 13 will be doubled up to $30,000. The foundation recognizes the generosity of a handful of anonymous donors who have agreed to provide the matches.
Around that time, supporters will be invited to spread awareness by posting “Did you know” graphics on their social media pages to separate fact from fiction regarding vasculitis. Participants can also help create a united, educated, and passionate community on social media by using the hashtags #VAM2025 and #VasculitisLooksLikeMe.
To celebrate International Vasculitis Day on May 15, the foundation provides access to educational materials and the Vasculitis Pregnancy Registry surveys, which are available in five languages. The registry will collect information to learn how vasculitis affects reproductive health and pregnancy outcomes.
On May 18, when World Eosinophilic Disease Day is recognized, the Vasculitis Foundation provides a comprehensive Patient Resource Guide, which is designed to support these patients throughout their journey.
To close out the month on May 27, patients are encouraged to record encouraging messages on topics such as “how to get through the hardest days,” “how to embrace new hobbies and adventures despite having vasculitis,” or others as a way to offer continued encouragement and support to the vasculitis community.
About the Author
