Month: July 2022

This year our World AS Day social media campaign reached 11.5 million and our posts and tweets were engaged with 1.4 million times. Excitingly, that is just from ASIF’s digital channels. The number of people who were exposed to World AS Day messaging is much larger than that, when considering the numbers reached through our members’ social media pages; the pages of our industry partners; and of course, the posts and tweets of people living with axSpA themselves.

More than 33,000 people visited the ASIF website. Our Members’ Symptom Checker Questionnaires in six languages, were the most clicked links on the website. Visitors also read our key messages, downloaded resources; and viewed the social media wall, which pulled together posts and tweets that used #WorldASDay2022.

These are just some of the many messages of support and hope left on the ‘Leave your Footprint’ webpage. Each of the footprints shares a powerful message and has become an inspiring place to visit.

Visit Leave your Footprint

Walk Your AS Off

Participants from 41 countries around the world participated in Walk Your AS Off this year.

The 335 participants in 45 teams walked over 40,000 steps. The event raises awareness each year as people post about their walks on social media – often including their personal story to explain why they are participating in the initiative. It is inspiring to read posts, like the one pictured left, about why people chose to take part.

A lot of the participants have participated in the event for many years. Some raise awareness and funds for their local axSpA organisation while others use it as motivation to get out and move every day during May – hopefully starting a lifelong habit.

More than 3,100 people from 103 countries participated in the virtual Global Spondyloarthritis Summit hosted by the SAA. More than 2,000 of the registrants live with axSpA.

The most watched presentations were: Micah Yu speaking about Arthritis and Nutrition (watched in total 850 times) and Angelo Papachristos’ presentation on Exercise, Physical Activity and Staying Active with SpA, which was viewed 568 times.

The majority of participants were from the US (2,006), with participants also from Canada (205), Australia (90), the UK (85), Bulgaria (81), India (65), Norway (62) and 97 other countries.

ASIF had a virtual stand at which we displayed leaflets from many of our member organisations, of which 170 were downloaded. Our Talk to be Heard videos were the most popular videos viewed 230 times.

It is with great sadness that we announce the passing of Margaret Lewington, physiotherapist of Brisbane, Australia in June.  A true champion of Ankylosing Spondylitis management, treatment and advocacy in the Musculoskeletal (MSK) healthcare and professional community in Australia and Internationally.

Margaret played an integral role in the organisation and operations of the Ankylosing Spondylitis Group of Queensland for over twenty‑five years. In addition to conducting weekly group hydrotherapy sessions for people with ankylosing spondylitis, Margaret played a core role in enhancing the social and education programs of the Group through her input in the newsletters, the organisation of speakers at the seminars conducted by the Group and in the organisation of many of the social activities (e.g., fun walks, dinners etc.).

Marg was influential in establishing the AS Victoria peer support group in 2005 along with Greg Tate, formerly of Brisbane, Ankylosing Spondylitis Group of Queensland and joint editor of Australia’s important national AS newsletter, AStretch.

In addition, Marg has been an AS advocate and activist in the professional MSK community, through active involvement with Arthritis Australia, professional Rheumatology (ARA) and Physiotherapy (APA) societies. Additionally, Marg had long supported the international community, with Axial Spondyloarthritis International Federation patient and clinical networks.

Margaret was well-known and loved among ASIF’s membership, she took an active part in ASIF’s Council Meetings for many years, travelling to United Kingdom, Russia, Bulgaria and Turkey among other countries.  She loved to feel connected to the world-wide community and was so dedicated that, due to the time zone difference, she regularly got up in Australia in the middle of the night to join ASIF’s online meetings and webinars. Margaret was passionate about learning and sharing information and about the international community and how we could all help each other.  In one of her last email to ASIF, she offered to assist us to find a way to connect physiotherapists working in axSpA around the world which we agree is a great idea.  Margaret will be sorely missed.

Graham Collins (AS QLD), Annie McPherson (AS Victoria) & Jo Davies (ASIF)

     

ASIF is delighted and honoured to welcome Maranda van Dam from South Africa, to the ASIF Board.

Maranda understands only too well the impact axSpA can have. In 2008 Maranda began experiencing symptoms; however, it took her almost 8.5 years of dead ends and frustration before she finally got a diagnosis.

Knowing that she didn’t want others to go through what she did without support, two years later, Maranda set up the Axial Spondyloarthritis Association of South Africa (ASASA). The organisation began as a Facebook group that reached out to people living with axSpA. Four years on, the private Facebook group has become a vibrant community with 243 members who ask advice, post information and share experiences. Maranda says that the most important role of the Facebook group is to be a safe place where AS survivors, as she calls them, can be themselves. ASASA now has a newsletter and anticipates growing at around 50 members per year.

Shockingly, South Africa has just 85 rheumatologists for a population of 60 million people. This is one reason why ASASA is so important, as for many people living with axSpA, seeing a rheumatologist is a once in a lifetime experience.

Maranda is passionate about advocating for people living with axSpA and sees the value in working as a global community.

Over the last few years Maranda has been increasingly involved in ASIF’s work, sitting on sub-committees and providing input into key projects.

A unanimous vote at the ASIF Council Meeting in Copenhagen on 31 May 2022, secured her place on the ASIF Board.

Maranda commented, “Giving a voice to a silent disease, has changed my life forever.”

As well as her work with ASASA and ASIF, Maranda is a successful business owner and a single parent to two wonderful boys. She enjoys an active lifestyle that includes riding her mountain bike, playing tennis and Pilates. Early in 2022, she completed a gruelling trip with her motorbike for 3 weeks in the Himalayas.

Maranda’s enthusiasm for life is contagious and she will not let her axSpA stop her from achieving her dreams.

See our full ASIF Board