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).
“I joined ASIF a few weeks ago, excited to embark on a voyage of discovery into the world of axSpA and rheumatology. While I have not yet sailed the high seas of axSpA, I have been inspired by the view from the shallow waters and am glad to share my early thoughts with you (although maybe with no more sea-faring metaphors!).“
“My previous knowledge of back health comes from personal experience, having had back problems for more than 20 years. While not axSpA, I have insight into back pain and how easily a flare-up can be triggered.”
“For many years I led a tuberculosis NGO, a disease with high levels of health inequalities. I also see inequalities in access to diagnosis and treatment for axSpA: the pain and disability will disproportionately affect countries with less developed healthcare systems, as well as people without access to quality healthcare or the ability to insist the pain is not in their head.“
“ASIF’s mission is to ‘grow, strengthen and empower our community’. In my first contact with members I have been impressed by your energy, ability and determination to make change happen in your countries. As an international organisation we understand that some of our members’ ambitions and challenges are similar, while others must adapt to local healthcare systems and structures. Our approach is based on combining ASIF’s access to global expertise with your local skills and knowledge, all aimed at helping you improve the health of your communities and countries.“
“I hope to talk with many of our members during the coming weeks and months to learn more about AS and axSpA in your countries, the work of your organisations and how ASIF can best support you. Our members are the reason for our work – first and foremost we are guided by your needs. Please contact me at any time on executivedirector@asif.info – I will always be glad to hear from you.”
Ruta Grigiene from Lithuania tells us why she joined our Board of Trustees
“I became a member of ASIF’s board of trustees in 2014, quite unexpectedly to myself. When I was diagnosed just half a year prior, I almost immediately got involved with the Lithuanian AS patients’ association. The association delegated me to participate in the ASIF conference, held in Sofia that year, with the goal of having the Lithuanian AS association become a member of ASIF. This goal we succeeded in.
While I enjoyed the experience, it came to me as a complete surprise when I was myself invited to become a member of the ASIF trustees team.
“At first, I was rather unsure what good I could achieve as a Trustee, how I would be able to help. However, little by little, I got involved in all the activities going on and am proud to be part of the team. We all learn and grow together, bringing more and more member countries into the ASIF family, so that we can help new organisations and execute global projects (IMAS, Delay to Diagnosis, as well as others).”
We are recruiting for new Trustees in anticipation of some of our current Trustees stepping down next year. If you are interested in joining the ASIF Board, please contact Jo Davies at office@asif.info.
We are delighted to welcome Mike Mandelbaum to the ASIF team as our first Executive Director.
Mike has worked in the NGO sector for over 30 years, focusing on health and international development. He has managed palliative care services in the UK and been Chief Executive of a palliative care education charity working in Eastern Europe and Central Asia. He also spent 13 years as Chief Executive of an NGO tackling tuberculosis in the UK and in high burden countries, primarily India and southern Africa. In common with axSpA, much of his work in tuberculosis focused on tackling diagnostic delay, with partnership work involving patient groups, affected communities, a wide range of community and NGO stakeholders, healthcare professionals and research institutions.
Mike commented, “I am very excited to be joining the world of rheumatology and axSpA. ASIF has demonstrated the importance of international collaboration and I look forward to building on its successes to improve the lives of people with axSpA and support the work of axSpA organisations across many countries”.
Mike lives near Brighton on England’s south coast with hills to the north, the sea – and mainland Europe – to the south, and within easy reach of London.
Zhivko Yankov, ASIF’s President stated: “Bringing on an Executive Director is a big step forward for ASIF, and one that I am confident Mike and the team are ready to take. I am sure Mike will prove a great asset to ASIF and our international axSpA community.”
