Guess what! aHUS Awareness Day 2018 is less than 2 months away! The world will join together on September 24, 2018 to raise awareness for the rare disease atypical HUS (aHUS or SHUa in some languages). That’s right, we have our own day. The first international aHUS Awareness Day was September 24, 2015 and was started by the aHUS Alliance.
Through the global aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the world) we will be doing a video project. For this year’s video we are giving you a chance to thank / honor your favorite caregiver or advocate. The caregiver or advocate could be a doctor, nurse, family member, friend, or pet but also feel free to recognize the support and advocacy from any special group of people such as your dialysis center, pediatric child life staff, faith family, co-workers, or medical care team.
Social support for anyone with an illness like aHUS is so important for their recovery, ability to cope and self esteem. This 2018 aHUS Awareness Day global project is an opportunity for those who have received such support to show their appreciation and support for those who give generously of their talents, compassion, and time.
The aHUS Alliance invites aHUS patients and their families from all nations to participate in this year’s aHUS Awareness Day video, a project led again this year by Jeff Schmidt. (Click HERE to see his aHUS Alliance slideshow projects from last year and the previous year, for past aHUS Alliance 24 September campaigns, see articles about campaigns in 2016 and 2017). It’s easy to participate. Send a photo (hopefully with your favorite caregiver), along with where you’re from, and a message you would like to say about your caregiver. Below is a sample slide from Jeff Schmidt’s family, showing Erica Schmidt along with a special nurse who makes such a difference in their life.
Sample slide for aHUS Awareness Day 2018
We welcome ALL those affected by aHUS from our global community to join in this project.
A personalized slide will be created especially for you, to be included in the aHUS Alliance international aHUS Awareness Day
Send these 3 items:
– Photo of you with your favorite caregiver, advocate or support team
(doctor, nurse, family, friend, pet, faith family, care team, or other individual or group)
Photo Shy? Consider creating an original piece of artwork based on the emotions or value of support you’ve received.
– Name and where you are from
– What you would like to say about your favorite caregiver
(Please be sure to keep your message short enough to fit in the message box (see sample slide).
Email your 3 entry items (or any questions) for your custom slide to project lead: Jeff Schmidt at email@example.com
Submissions are due by September 17, 2018 to allow time to put this together, but the earlier you can turn in your entry the better!
Click the link below for Atypical HUS
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