24 Sept 2021 – aHUS Awareness Day

Article No. 443

9 July 2021

 

When facing difficult or complex circumstances, people and groups often band together to search for answers or work toward a brighter tomorrow. Never has this been a more true and noble collaborative goal than within the atypical HUS community, and which is the focus of aHUS Awareness Day 2021 – United in Advocacy.

 

Created by the aHUS Alliance in 2015 as a way to raise visibility about the rare disease atypical hemolytic uremic syndrome (atypical HUS), this Friday 24 Sept will be our 7th annual campaign. Since that first international ‘aHUS Day’, the aHUS Alliance Global Action team has continued to lead this annual 24 September awareness campaign by raising issues, promoting efforts, and creating resources for aHUS families and the general public.  

 

The 2021 aHUS Awareness Day theme of being ‘United in Advocacy’ features the concept that it’s through shared information, ideas, efforts, and conversations that we can work together to improve options for better patient care and brighter futures for aHUS patients and their families. 

Advocates are people who actively work, through their words or efforts, to support a cause or concept.  Few advocates work alone, but instead join together with like-minded people to combine with united purpose toward common goals.

 

Why are united efforts so integral to achieving better outcomes for those affected by atypical haemolytic uraemic syndrome (atypical HUS or aHUS)? People with atypical HUS benefit greatly from joining with family and friends to meet short- and long-term needs as they navigate aHUS treatment aspects with lifestyle and daily routines at work or school. Parents, partners, and family caregivers must unify  schedules and balance both needs and responsibilities to meet the challenges facing a loved one who is living with atypical HUS. Research and academics need patient participation in studies and clinical trials, uniting scientific endeavors with patient outreach and engagement. Clinicians treating someone with atypical HUS face difficulties in treating a very rare disease that is complex, unpredictable, and often include a need for a patient care team that crosses multiple medical specialties.

 

The 2021 aHUS Awareness Day campaign invites everyone to participate in raising visibility about atypical HUS, and to unite as an international network of support within the aHUS community – join in the 24 Sept campaign and become ‘United in Advocacy’.

 

About atypical HUS

Atypical Hemolytic Uremic Syndrome is a life-threatening disease characterized by the systemic formation of blood clots (TMAs) throughout the body potentially causing damage to the kidneys and other organs, with complications that may include serious or fatal events including stroke, cardiac issues, and kidney failure.  It affects both adults and children and is often associated with an uncontrolled activation of the complement system, part of the body’s protective immune system. Read more HERE

 

 

 aHUS Day 2021 – Show You’re United in Advocacy!

 

Our 2021 Call to ACTION

Organize, Promote or Participate locally in a Blood Donation or Organ Donor Registration Drive

 

Plasma therapies (pheresis or infusions) are frequently used to treat atypical HUS patients in many nations, so availability of blood products is critical to saving aHUS lives. Kidney function issues affect most people diagnosed with aHUS, with many patients needing dialysis and a kidney transplant.  

 

To showcase and address the needs within the aHUS community for plasma therapy and kidney transplants, we ask that individuals, groups, and companies join in to participate in (or sponsor) blood donor drives and organ donor registration efforts around the world.

 

Check with business leaders, professional or service organizations, and your school or workplace about hosting an event in your area. Consider working with a charitable organization, hospital, or faith center to host a donation campaign with others, either locally or online.

 

Note:  Blood and organ donation guidelines and policies vary widely around the world, so please check with local or national organizations to learn local details.

 

 

 

 

 

24 Sept 2021: aHUS Patient & Family Video Project  

We’re very pleased to announce that aHUS global action for this year’s 24 September awareness campaign will once again feature a video project featuring photo entries from aHUS families around the world.

The aHUS Day 2021 video slideshow project will be led once again by Jeff Schmidt (USA), the aHUS advocate heading our aHUS Alliance team’s R.O.W. program for organization & support for emerging national aHUS advocacy groups. Here are the details:

This year’s theme is “United in Advocacy”. Just like years past, the aHUS Alliance is inviting our global aHUS community to join in the “celebration” of aHUS Awareness Day by participating in a video project. For this year’s project, we are asking you to tell us what being “United in Fighting aHUS” means to you.

We welcome ALL those affected by aHUS from our global community to join in this project. To participate, send in:

– Name and where you are from
– 1 photo
– Short message (up to 50 words) explaining what being ‘United” means to you.

From there, we will create a slide (see sample below) that will be included in this year’s video/slideshow. Please start sending in your submissions now so I can post a steady stream of slides leading up to aHUS Awareness Day. This will help us raise awareness of aHUS around the world for the next couple of months!

You can email your submission to Jeff Schmidt at jeff@ahusallianceaction.org

Submissions are due by September 17, 2021 to allow time to put this together, but the earlier you can turn in your entry, the better!

 

This aHUS Day 2021 project, featuring aHUS family voices & patient experiences from around the world, will premiere on aHUS Awareness Day (24 Sept),  but meanwhile we invite you to enjoy last year’s 2020 aHUS Day video project! (Click HERE to View)

 

 

 

More Ways to Participate in aHUS Awareness Day

Send questions, photos, YouTube links, and article submissions to:  info@aHUSallianceAction.org

*Have you reached out in ‘Unity’ to another aHUS patient or caregiver? Help others know how to offer support, by sharing your experiences (in writing or YouTube video).

*Create artwork to express the 2021 theme ‘United in Advocacy’. Express what this phrase means to you – then display & share it! (drawings, tee shirt, edible art, fabric arts etc)

*Write an article about how you & your family are affected by aHUS, helping others to understand your challenges and successes (up to 500 words long, to publish on the aHUS Alliance global website)

*What does it mean to be an aHUS advocate? Think of ways to participate locally and globally, with these questions & idea starters.

*“Sharing the Caring”:  Snap photos of banners, posters, or events that locally support someone living with aHUS.  Explain the group or project, its goals, and what their support means to those involved.

*Contact your local media to arrange an interview on radio, local television news, or newspaper.

*What challenges do you face, and what gets you through them?  Atypical HUS patients and their families often face common situations, issues, social or economic pressures, or other stresses of daily life. Help others with aHUS cope by sharing your ‘life hacks’ in an inspirational image, aHUS Alliance article, or YouTube video.

*Gather friends & family to set a date and go together to donate blood ‘In Memory of’ or ‘In Honor of’ a loved one with aHUS.

 

For More Information & aHUS Assets, see

Atypical HUS – Info Centre

Atypical HUS – Resources   Articles, Press Kit, & Information

Atypical HUS Info Centre –  aHUS Awareness Day (history & assets)

24 Sept Campaign Images

Follow aHUS Awareness Day on Twitter @aHUS24Sept 

 

 

Looking for items which aHUS Awareness Day efforts?

From the group that created aHUS Day in 2015, and in response to requests from supporters,

we offer 24 September items on Zazzle. (more arriving, late Summer 2021)

Click the link above to see the Official aHUS Day storefront