Calling all Americans! The first ever aHUS Awareness Day is coming up fast. It is September 24, 2015. The world is joining together that day to raise awareness for aHUS.
The global theme for aHUS Awareness Day is ‘Communication’. There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis, access to treatment and healthcare options, shared data and information among aHUS researchers worldwide, and increased physician education about atypical HUS.
The global aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the world) has chosen an Airmail letter as an international symbol of communication. All of us here at Atypical HUS Foundation would love to have everyone participate in a video project that could be shared globally on September 24th. What do you need to do? We would like everyone to email me a picture of themselves along with their name, where they are from, and a message you'd like to tell the world. These will placed in the Airmail letter template that the aHUS Alliance has agreed upon (see the example below) and put in a video. Those who are tech savvy and would like to create their own Airmail letter are encouraged to do so to help save time (and email that to me) but anyone who is intimidated or doesn't have the time can just email their picture, name, where they are from, and their message. Please don't stress about it, there is no right or wrong (except your name and location). The picture and message could be pretty much anything. Keep in mind when taking the picture that closeups work best as the picture does not cover the entire slide. And a long message will be hard to fit.
We encourage those in other countries to participate in whatever projects your country is planning. But we welcome anyone from our global community to join in this project. And those whose countries that don't have an official association and don't have their own project to participate in, I strongly encourage you to join the American project. We want everyone to be included on this special day!
- For those who want to create their own Airmail letter from the template, send me an email and I will send you the template and instructions on how to do it. Don't worry, if you decide you can't do it, just send me your picture and info and I'll take care of it.
After putting your Airmail letter together I will email it to you so you can share it on your Facebook page. And of course we will want you to share the video so the whole world can see it!
I will need to have your submissions by 9/12 to give me time to put this together. The earlier you can get them to me the better!
Here is my email address: