We are finalising our new Delay to Diagnosis materials, which help raise awareness of the key signs and symptoms of axSpA; and the devastating effects of the diagnostic delay.
As well as three short films, translated into nine languages, ASIF will provide an infographic on the diagnostic delay, including the physical, psychological and socio-economic impacts.
These materials will be delivered in a toolkit alongside key messages and suggestions for social media content. These resources will be available in August, but can be used at any time. Look out for a forthcoming invitation to a webinar, where we will introduce the full set of resources.
Cassie Shafer is the CEO of the Spondylitis Association of America (SAA) and tells us why she joined our Board of Trustees.
“As a long-time non-profit executive, I’ve had the honour to work with many different groups of people that are often underserved. Serving these people, in whatever way I can, has been both fulfilling and humbling.
“Shortly after joining the Spondylitis Association of America, I discovered something truly unique about those living with spondyloarthritis. The word ‘community’ is often used to describe groups of people bound by a common thread. But after working side by side with the patients, loved ones, caregivers, and the dedicated medical professionals who devote their efforts to improving outcomes, I discovered a true community of people whose strengths define them much more strongly than their disabilities.
“The Axial Spondyloarthritis International Federation helps to ensure that spondyloarthritis organisations across the globe, large and small, have access to the tools and information needed to serve their constituents. I am honoured to play a part in their important work. We are always stronger together.”
The Psychological Impact of axSpA and the Role of Patient Organisations
Date: 27 June
Time: 14:00-15:00 BST
Nadia Malliou will address the emotional and psychological impact of axSpA and how patient organisations can support their communities. Following Nadia’s presentation there will be an opportunity for discussion and to share ideas.
About Nadia…
“I am a professional psychologist, with experience in various professional contexts in mental health services and administration. I have specialised through further training with the European Pain Federation EFIC in chronic pain management and for the last few years I have been working with the Pain Unit at the Thessaloniki General Hospital AHEPA to offer help and support to as many patients with rheumatic diseases as I can.”
“My experience both in management positions and my training and involvement with teams has helped me to offer, and continue to wish to offer, as much as I can to the Hellenic League Against Rheumatism EL.E.AN.A. For the last 5 years I have been intensively involved in chronic pain management, both academically and clinically, through projects and collaborations of the association, such as the collaboration with the Medical Physics and Digital Innovation Laboratory of the Aristotle University of Thessaloniki to create pain management applications.”
“I have represented my country in the EULAR PARE and EULAR conferences and in the congress of the EUROPEAN PAIN FEDERATION EFIC. At the first congress of the World Patients Alliance, I had the pleasure of meeting many patients from around the world, to associate with health professionals and to gain useful experience and knowledge, always aiming to apply them in Greece.”
The World AS Day awareness campaign reached more than 48 million people around the world.
This is a significant jump from previous years. And that is just half the story – our members, industry partners, healthcare practitioners and people living with axSpA posted, tweeted and shared content through their own channels resulting in the awareness campaign reaching a much larger number. In addition to social media, in-person and online events were held around the world, including a series of walks in South Africa, workshops in Colombia, and conferences in Italy and Spain.
More than 70,000 people visited the ASIF website during the campaign, with over 90% of them spending enough time on the World AS Day page to understand the campaign and learn more about axSpA.
A comprehensive report on the campaign is being written and will be shared with members soon.
Global Stretching Events
Yoga for AS
Two ‘Stretch and Move’ events got people moving on World AS Day
The events, run by Jamie Boder and Geoff Lindsay, co-Founders of Yoga for AS were designed specifically for people with axSpA.
Jamie and Geoff, who both have axSpA, provided options for each pose, making the sessions accessible to everyone regardless of their level of flexibility.
The sessions were watched on our website and social media channels. Delegates at the SAA’s Global Spondyloarthritis Summit had the opportunity to watch the sessions during the Summit in the Activity Lounge.
The sessions are available to watch on our website. They will feature on our Resources webpage long-term so they can be used at any time.
Walk Your AS Off
This year 86 teams from 39 countries reported over 102 million steps on our way to Mars!
Written by Jennifer Visscher, Walk AS One
This virtual walking campaign brought together people from around the world, united by a common goal—to raise awareness and support for axSpA and related spondyloarthritis diseases.
The campaign’s achievements are a testament to the strength, determination, and unwavering support of the incredible community of participants.
Uniting for a Shared Cause
The Walk Your AS Off campaign rallied individuals affected by axSpA and AS, their families, friends, and supporters, generating a powerful sense of unity. Together, participants embarked on a journey, symbolising the daily challenges faced by those living with the disease.
The impact of the 2023 Walk Your AS Off Campaign was felt not only within the community but also in the broader public sphere. Through the dedication and passion of participants, the campaign spread awareness, educating others about the condition, and broke down stigmas associated with invisible illnesses.
As Cheryl said, “I had no idea I could do even 200 steps a day. When I was inspired to join Walk Your AS Off, I couldn’t believe I was doing thousands of steps a day and I could see and feel my progress. Walk Your AS Off gave me the courage and community I needed to take steps to be more active and I’m so very grateful for that.”
A Global Movement
One of the most remarkable aspects of Walk Your AS Off is its ability to connect individuals from all over the world. The campaign transcends borders, fostering a global movement that promotes solidarity, empathy, and understanding. It has created an international platform for sharing experiences, providing support, and spreading awareness about axSpa on a global scale. Congratulations and Appreciation
To every participant, supporter, and volunteer involved in this year’s campaign, we extend our heartfelt congratulations and deepest appreciation. Each step taken, every conversation initiated, and every dollar raised has made a difference in the lives of individuals living with AS.
2023 Global Spondyloarthritis Summit
Recap of SAA’s 5th Annual Global Spondyloarthritis Summit
Written by Jason Blackwell, SAA
SAA’s 5th Annual Global Spondyloarthritis Summit is a two-day virtual event designed by and for the spondyloarthritis community.
Held each year across World AS Day during SpA Awareness Month, the Summit features 12 global rheumatology and health experts, presentations and speakers are vetted by an advisory committee composed of patients and physicians to identify the topics that are most important for people living with the disease.
Now in its fifth year, the Summit had more than 3,000 registrants attend from 92 countries. Our post event survey found that 98% of respondents would recommend the Summit to others living with SpA, and 99% plan to attend in 2024!
This year’s program featured the topics below:
What is Spondyloarthritis? An Overview presented by Christine Stamatos, DNP, ANP-C, Northwell Health
Medications for SpA – Including New (i.e., JAKs) and What’s on the Horizon. Drug Combinations & Interactions presented by Robert Inman MD, FRCPC, FACP, FRCP (Edin), Schroeder Arthritis Institute at University of Toronto
SpA Research Update (Advanced Topic) presented by Kristi Kuhn, MD, Ph.D., University of Colorado Anschutz Medical Campus
Cardiovascular Disease and Spondyloarthritis presented by Jean Liew, MD, MS, Boston University School of Medicine
When is Spine Surgery Recommended? Albert P. Wong, MD, DOCS Surgical Hospital
The Role of Genetics in Spondyloarthritis. Genes Associated (HLA-B27 and Beyond), Heritability (Advanced Topic) presented by Judith Smith, MD, Ph.D., University of Wisconsin School of Medicine and Public Health
Women & Spondyloarthritis: Childbearing Years Through Menopause presented by Peter Taylor, MA, Ph.D., FRCP, FRCPE, University of Oxford
Sleep & Spondyloarthritis presented by Soha Dolatabadi, MD, Arthritis and Pain Relief Medical Center
We’d Like to Know: Cannabis Update presented by Mary-Ann Fitzcharles, MD, McGill University
Diet & Nutrition: How/Why Does Gut Microbiome Affect Spondyloarthritis (Advanced Topic) presented by Mathew Stoll, MD, Ph.D., MSCS, University of Alabama at Birmingham
Flares: Possible Triggers to Avoid & How to Treat a Flare presented by Pendleton Wickersham, MD, FACP, Arthritis Associates PA
Tai Chi: Meditation in Motion with Live Demonstration presented by Soneka Lee, DPT, Golden Days Wellness Training, LLC
In addition, the Summit also featured other interactive elements such as a Leaderboard Challenge, Daily Quizzes, BASDAI calculator, Exhibit Hall, Poster Hall, and yoga programs in the activity lounge. We are grateful to everyone who played a role in helping to make the Summit successful, including our sponsors and our partners.
The materials can be used by our members, and by patients and caregivers. The improved site will also signpost healthcare professionals to relevant axSpA information and tools.
Our mission is ‘to advocate globally to improve the lives of people affected by axial Spondyloarthritis and related conditions. To grow, strengthen and empower our community, and to raise awareness around the world’.
We want to help our members to do that too, so we have created a range of guides that support members’ work. The materials range from a step-by-step guide to create a new patient organisation to guidance on getting support from pharmaceutical companies; from social media and websites to fundraising and working with volunteers.
We are proud to have also produced four new guides about axSpA, including a detailed overview of the disease, as well as how to live well with axSpA and treatment options. We have a comprehensive guide on exercise and movement that is complemented by a new set of exercise videos. All of these guides are editable and can be adapted by our members to include their own logo and contact details, providing a ready to use resource for your own members.
The existing resources and links to members’ resources remain in place. But they are now organised over three sections: about axSpA; patient organisation support; and exercise and movement. We encourage you to look through the new webpages and, as always, we welcome your feedback.
Fundraising, specifically direct or sometimes known as community fundraising, is the topic of our March Webinar (postponed from February).
Liz Marshall will speak about how NASS uses Walk Your AS Off to raise funds. Sean Ewart will discuss the different types of community fundraising that the SAA implements.
Please email us at admin@asif.info to secure your space (Members only).
Michael Mallinson attended the American College of Rheumatology (ACR) Convergence Meeting in San Diego in November 2022. He has provided a series of comprehensive reports on key sessions.
Thank you, Michael for your commitment to sharing information for the benefit of people living with axSpA.
Click on the reports to read them:
ASAS-EULAR Recommendations for the Management of Axial Spondyloarthritis: 2022 update
For an Exploratory Analysis of the Potential Disconnect between Objective Inflammatory Response and Clinical Response following Certolizumab Pegol Treatment in Patients with Active Axial Spondyloarthritis, read here.
Bimekizumab Improves Signs and Symptoms, including Inflammation, in Patients with Active Non-Radiographic Axial Spondyloarthritis: 24 Weeks Efficacy and Safety from a Phase 3 Multicentre, Randomized, Placebo-Controlled Study, read here.
Continuing (Full or Reduced Treatment) versus Withdrawing from Golimumab in patients with non-radiographic axial spondyloarthritis who Achieved Inactive Disease: Efficacy and Safety Results from a Placebo-controlled, Randomized Withdrawal and Retreatment Study (GO BACK), read here.
Comparison of the Effect of Treatment with NSAIDs added to Anti-TNF therapy versus Anti-TNF therapy alone on Progression of Structural Damage in the Spine over Two Years in patients with Ankylosing Spondylitis: an Open-Label Randomised, Controlled, Multicentre trial (CONSUL), read here.
Profiling of Systemic Immune Responses in Axial Spondyloarthritis Patients reveals Strikingly Distinct Cellular and Molecular Mechanisms of Action of IL-17A Inhibitors and TNF Blockers, read here.
At the end of 2022, ASAS (Assessment of Spondyloarthritis International Society) and ASIF signed a Memorandum of Understanding (MOU) to put our relationship on a more formal footing.
This MOU means that both organisations will aim to keep each other informed of key plans agree to identify opportunities for collaboration and will contribute expertise and experience towards mutually agreed objectives.
The Trustees of ASIF were delighted to be invited to send two representatives to attend the ASAS 2023 Annual Meeting which took place in Athens in January. Andri Phoka, Secretary, ASIF and Jo Davies, Assistant Director, ASIF joined the meeting.
We are especially thankful to Xenofon Baraliakos, President of ASAS and to the rest of the Executive Committee for making us so welcome. During the meeting, ASAS educational activities and research projects were presented and discussed. This report covers just a few highlights from the ASAS 2023 Annual Meeting.
This year we want to see more teams participating in Walk Your AS Off than ever before.
The Walk AS One team have been working hard to make the event more accessible, with the website now available in different languages.
We encourage our members and supporters to create a team and invite their local community and colleagues to join it. Find out more about what’s new with Walk Your AS Off below…
Walk Your AS Off is excited to share that the new language translation has been implemented on the Walk Your AS Off website and will be on the step reporting application at Walk AS One soon! With language translation available to any Google Translator language we are looking forward to more ASIF teams and walkers!
There are also a number of small changes happening to both websites to help make navigation easier and information on participation simple and clear.
New information for email subscribers will be sent to help ensure your teams are up to date on all event information including a weekly prompt/reminder each Sunday in May to log in and record steps. This will include a direct link to login and a QR code, and printable log for those that prefer having something that isn’t digital.
Walk Your AS Off is really excited about our 2023 campaign! We will be looking for walk selfies (a photo ‘selfie’) again this year especially during World AS Day! Please use the hashtag #ASwalkselfie or #axSpAwalkselfie on Instagram and Facebook so that we may track and share our members and teams where they walk across the globe! These will work amazingly in conjunction with the ASIF key messages and hashtags being used on World AS Day.
We are two months into our Walker Wednesday live feed each Wednesday at 2pm US Eastern Time /7pm GMT. If your organisation would like to share about your team and organisation we’d love to have you on a Zoom call. These Zooms are shared live on Facebook as well. We’re also compiling a library for them on YouTube.
Feedback and suggestions from all ASIF member organisations on what future features you would like to see on the website and Walk Dashboard are really appreciated. Please email us at info@walkasone.org with any thoughts, suggestions, or concerns.
World AS Day is only two months away. If you missed our World AS Day Webinar, you can watch it here. The Webinar talks you through the campaign, the available assets, and how you can make the most of World AS Day.
One of the downloadable assets is a template calendar for social media. It includes the dates that ASIF will post/tweet content. We encourage you to follow the calendar; however, you are welcome to adapt it to your organisation’s existing social media calendar and post/tweet when it works best for you. ASIF will begin sharing content slowly from the end of March, launching the campaign fully in April.
Following feedback from one of our members, the editable templates have also been made available in Canva for those not using Photoshop. The link to the templates can be found in the downloadable Tool Kit.
Visit the webpage to find out more about the campaign and download the Tool Kit and editable assets (asif.info/worldasday).
Global Stretching Events
On World AS Day, we will host two online stretching events to enable as many people around the world to join as possible (the times and information on how to join the events will be confirmed soon). The sessions will be designed for everyone with axSpA, giving options for each stretch from very gentle for those with limited movement, to more of a challenge for those who are more flexible. We are excited about bringing the global axSpA community together through movement.
The events will be run by Jamie Boder, co-Founder of Yoga for AS. Jamie is a qualified yoga instructor and has axSpA himself, so understands the challenges posed by the disease, and the positive impact movement makes.
Jamie commented, “I am delighted to share these sessions with you; it will be an opportunity for you to find something that works for you. I understand the many ways AS / axSpA presents itself. These sessions are open to everyone. In my experience, after sharing these types of sessions to thousands of people with AS and axSpA, many people come out from the sessions with less pain, stiffness and fatigue. That is the magic of movement. My classes are very inclusive, fun and welcoming and I look forward to seeing you there!”
Global Summit
As the premier virtual health event for the spondyloarthritis community, the 5th Annual Global Spondyloarthritis Summit features renowned rheumatologists and other health experts who provide the most up-to-date findings and medically reliable and comprehensive information on essential topics that matter to those living with the disease.
Whether you are newly diagnosed or were diagnosed some time ago, the Summit is your opportunity to learn tips and tools for managing your symptoms while also connecting with others.
Under the theme “Moving Together Towards Better Health Outcomes” this year’s program features 12 experts from the international community who will discuss topics such as Flares and Possible Triggers; SpA Research Updates; Sleep Issues; Women & SpA; Diet & Nutrition; Surgery & Joint Replacement Recommendations; Cardiovascular Disease, and more!
ASIF will have a Booth at the Summit and will display information about our Members. Please send your organisation’s leaflet to Jo de Bry before 31 March at communicationsmanager@asif.info.
Please use the downloadable social media asset on our World AS Day webpage to promote the event to your members and encourage them to register.
