Leading up to atypical hemolytic uremic syndrome (aHUS) Awareness Day on Sept. 24, the aHUS Alliance is seeking participation from the global community for a new video project.
As in previous years, the nonprofit organization will include submissions in a video and slideshow that will be posted on its website to further promote awareness of aHUS, an extremely rare disease that affects about 20,000 individuals around the world.
For this year, aHUS Alliance, which organizes aHUS Awareness Day, is asking patients, caregivers, and others to answer this question: “What is your key to wellness and well-being?” Submissions may be up to 50 words in length, and must include the participant’s photo and place of residence.
“What’s the key to aHUS wellness and well-being? How can we unlock new doors to building brighter futures for those living with atypical HUS? We encourage all aHUS advocates and stakeholders to express their views on aHUS Wellness and Wellbeing,” the organization states in its announcement.
Send submissions to Jeff Schmidt at [email protected] The deadline is Sept. 17 but early submissions are helpful to give the organization time to put the project together. The plan is to post a steady stream of slides in the run-up to Sept. 24. Go here for a sample submission.
The question posed by the project aligns with the theme of this year’s aHUS Awareness Day: Wellness and Well-being. Since 2015, the day has been set aside to share information about aHUS and to heighten disease awareness.
“People affected by aHUS face many challenges, so they strive for a return to health and well-being in all areas of their lives,” the organization states. “Clinical descriptions of atypical HUS often neglect the disease’s impact on the lifestyle of those diagnosed with aHUS. Personal quality of life as well as interpersonal relationships and family, or work/school balance, are also important aspects to recognize.”
In addition to participating in the video/slideshow project, supporters are encouraged to use the visual imagery of “keys” in their articles and social media posts as a tie-in to this year’s theme. The organization suggests writing about what doors or opportunities need to be “unlocked” to improve or support aHUS wellness and well-being.
The nonprofit also encourages advocates to consider highlighting efforts to help the community, and supporters to collaborate on and promote new initiatives.
Other ideas for the day include:
- Writing an article of up to 500 words about the personal impact of aHUS on family. The narrative may be published on the aHUS Alliance website.
- Making a video for the organization’s social media platforms about personal experiences in returning to wellness.
- Describing a time of support for another aHUS patient or family. The organization will feature this on its website as well.
- Taking photos of banners, posters, or events that support a local aHUS patient.
- Contacting local media to arrange an interview.
- Making a list of actions and attitudes that can help patients with the disease, and sharing it on social media.
“There’s no one typical case of atypical HUS, which is why the aHUS Alliance has chosen to gather diverse situations and experiences from around the world for this year’s 24 September campaign,” the organization states.
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