It is estimated that one in 1,000 people in Aotearoa live with multiple sclerosis (MS), which translates to almost one new diagnosis per week; each person experiencing MS differently, with varying symptoms occurring at separate times.
Since 1964, the Auckland and North Shore societies both recognised that a key aspect of advocacy was to destigmatise the condition, correct misunderstandings, and shift public perceptions of MS, while also highlighting the rich lives that people with MS (pwMS) can lead; hence raising awareness. Early awareness campaigns included sharing personal stories in society newsletters, providing peer support mentoring, and publishing books such as “Towards a United Voice: A History of the Multiple Sclerosis Society of NZ Inc.” in 1990.
Campaigns also included mailing leaflets, television appeals—including the Four-leaf Clover MS appeal in 1989, a feature on a new programme launched by TVNZ in 1998 called “DisAbilities,” and “Inside Out TV” as well as occasional articles in the “Women’s Weekly”—along with fundraising events and the first Awareness Week campaign held in September 1999. That same year, MS Auckland launched its first-ever website.
David Ashton was diagnosed with MS in 1982, but because diagnoses at the time were often vague, he was advised to simply “carry-on with his life”, as nothing may happen. After attending a support group organised by the North Shore Society, he realised that although the attendees had good intentions, they often treated members with excessive care, only offering tea and comfort. In an interview in 2014, he recalled, ‘These well-meaning people would wrap you up in cotton wool, feed you with tea and coffee and say “there, there, you’ll be alright.” He found that some other members were not attending events because they did not want to be treated this way. In response, he organised pot-luck dinners for those who worked during the day, which created a more sociable environment. He also started a social group for men called “Boys R Us,” addressing the fact that few men attended coffee groups.
David subsequently took over the production of the North Shore Society’s newsletter, introducing various sections, including a jokes page, letters to the editor, and a recipe page, transforming it into an MS-focused publication reminiscent of a lifestyle magazine. Despite receiving pushback from the National MS Society office for including jokes, he knew that members appreciated it. David believed that making people laugh was “half the battle.” He also began drafting short stories for the newsletter, which encouraged members to share their own experiences. This approach helped normalise the conversation about MS, highlighting that while everyone was different, they were all navigating similar emotions.
In 1989, David and Tina French participated in the first national Four-leaf Clover television appeal for the Multiple Sclerosis Society of New Zealand (MSNZ), which provided the first portrayal of people with MS living normal lives. David noted that the entire Society was very excited by this development, leading to the creation of more sophisticated advertisements. In 2010, both David and his partner Sandi appeared in an “Open Door”, a documentary produced by Morningside Productions, which showcased individuals living with MS.
David went on to write his memoir titled “Crippin Place”, with the help of a Light-Operated Mouse and Keyboard (LOMAK). He also joined the North Shore society’s executive committee because he felt that the members’ needs were not being adequately addressed. He was then elected President, a position he held from 1993 to 1996. In 2006, he and Sandi received a civic award from the North Shore City Council for their services to the community.
Since the mid-2000s, social media platforms have provided an interactive space for sharing stories and raising awareness. Key themes have included: “MS is not contagious or infectious,” “pwMS experience both good and challenging days,” “pwMS can still achieve their dreams,” and “MS affects both the body and the brain.” One notable example was the “Wrong Delivery” campaign in 2014, a collaboration between MS Auckland, indie advertising company HUNCH and Hell Pizza. This campaign involved sending pizzas to unexpected addresses with a message illustrating that MS can sometimes scramble one’s thoughts. When recipients opened the pizza boxes, they found the message: “Wrong delivery? It happens when you have MS.” The campaign generated a lot of buzz around Auckland, leading to multiple office shout-outs. Hell Pizza donated a portion of every pizza sold to MS Auckland, raising $16,000. The campaign also increased public awareness of MS and sparked conversations in the media following several radio station deliveries. HUNCH won Gold and Silver awards at the 2015 NZ Direct Marketing Awards for their efforts.
Communities have participated in the annual MS Awareness Week, including schools, corporations, clubs, families, and volunteers. Activities have ranged from runs and cycling events to swims, art exhibitions, and silent auctions, all aimed at raising funds and awareness.
The adoption of recent technologies since 2020, such as Zoom, WhatsApp, and Teams, has improved outreach and communication efforts. In addition to this, was a review of the ‘Multiple News’ magazine in 2023 which has since expanded its scope to include two additional North Island regions, Tauranga Bay of Plenty and Rotorua/Taupō.
Informational webinars have been held monthly since 2022 and quickly became a valued programme, reflecting society’s changing needs to receive information through digital means. In 2024, MS Auckland hosted a webinar for Awareness Week featuring Dr. Jennifer Pereira, who spoke about the “Transition to Progressive MS.” It was the most popular yet, attracting over 100 participants. Other topics have included Work and employment law, Needs assessment, Health consumer rights, providers’ duties, Personalised care plans; plus, wills, and powers of attorney.
Ultimately raising awareness is about amplifying the voices of people living with MS. Members of MS Auckland have shared their personal stories, reinforcing the message: “Multiple Sclerosis waits for no one, but with the right support, we can keep moving forward and still achieve our goals.”
Anu Dravid shared her inspiring journey during one Awareness Week, emphasising the importance of self-advocacy following her diagnosis. ‘I have my own back, and I’ve developed the confidence to advocate for myself,’ she stated. She stressed that equitable measures are essential for supporting individuals with MS, requiring tailored assistance based on varied needs.
After her diagnosis at the age of 18 in 2015, Anu became a strong advocate for Ocrevus, a vital medication for relapsing remitting multiple sclerosis (RRMS), which was not initially available in New Zealand. Collaborating with MS Auckland and MSNZ, she and others lobbied Pharmac for its inclusion and participated in meetings to push for access. These efforts helped establish a ‘Compassionate Use Programme’ for Ocrevus in 2017, leading to its official approval in Aotearoa in 2018.
Another aspect of raising awareness involves the community education work conducted by the MS Auckland Community Advisors, who support people diagnosed with MS and those close to them to navigate challenges both at the present time and for what might be around the corner. This can include supporting employers and carers to help people with MS to live as full lives as possible. Living with MS has many challenges but through raising awareness it is hoped that support and understanding can make life a little easier for pwMS.
MS Auckland is grateful to all those who have made generous donations of time, expertise, and funds to the society. We’ve worked hard for 60 years to raise awareness about the many sides to multiple sclerosis, increasing visibility and creating a stronger support base for our members.
