Videos Sought as Memorial Art for WFH 2022 World Congress

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by Mary Chapman |

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Those wishing to memorialize family members or friends who have lost their lives due to an inherited bleeding disorder like hemophilia, and who want to help empower and educate future patients, are invited to create a video for the World Federation of Hemophilia (WFH) 2022 World Congress.

Specifically, the World Federation of Hemophilia is calling for what’s known as memorial art, used to honor and remember people who have died. Large-scale, high-profile examples include the Vietnam Veterans Memorial in Washington, D.C., and the AIDS Memorial Quilt, which has been displayed around the U.S.

For this project, people are asked to submit short videos featuring their stories of loss — and remembering those who lived. The submission deadline is March 1.

“It’s important to share the stories of those who are not with us anymore, and share the experiences of the people who were close to them,” the WFH stated in a post about the memorial.

“Statistics are easy to dismiss — names, faces, stories are not. By contributing to this project, you will not only shine a new light on the members of our community who have passed, but you will also help the next generation better understand its history, which can help them manage their own challenges living with a bleeding disorder,” the organization stated.

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The “mini memorial” videos will be displayed at the WFH World Congress, which will be held in person this year, May 8–11 in Montreal, Canada. Videos can be recorded anywhere, on any device, and in any language.

In the videos, which must be under five minutes in length, participants are asked to introduce themselves, say where they live, and explain their connection to the bleeding disorders community. Those who are memorializing someone they have lost should introduce the person and explain their connection. Patients also are invited to share their own experiences and how they’re managing their condition.

The memorial art should then share information or a story that will help viewers connect with the person being remembered.

Before producing the video, the WFH suggests that participants ask themselves what their favorite memory is of the person they’re memorializing, and whether there’s a funny story to share. If participants have a photo or short video of the person they’re honoring, they may wish to use it in the memorial art. Or, maybe there is other art participants have created in their loved one’s memory that they’d like to share, or perhaps they might show something meaningful the person possessed. Other ideas include recording from the loved one’s favorite location. Go here for an example of a memorial video.

Videos should be submitted as an .mp4 file to [email protected]. If a file transfer is needed, the WFH suggests using WeTransfer or Dropbox apps.

“The bleeding disorders community is no stranger to the loss of loved ones,” the WFH stated on a webpage dedicated to the project. “We think it is important to help bring forward the lessons and knowledge from the losses our community has faced — to activate them and to enliven those we have lost.”

“It is our belief that knowing something about the people who have left us and those who have survived, will strengthen our bonds with each other and help to ensure all people with bleeding disorders will enjoy a more certain future filled with promise, no matter where they live,” the organization added.

The upcoming World Congress, which also may be viewed virtually, is presented every second year for the global bleeding disorders community. It seeks to involve patients, caregivers, family members, hemophilia organizations, physicians, scientists, and healthcare workers. The event features the latest developments in bleeding disorders treatment and care.

Go here to register and here for details on the planned program.