As part of the marking of our 15th year, we have been talking with many people affected by MS about what the current rate of progress over the last decade and a half means to them; as well as the obvious treatment and breakthrough gaps and the success that is clearly yet to be achieved.
MS scientists, health economists and epidemiologists (researchers on a population scale) provide the proof of where quality of life and health savings have been enhanced in terms of newer and more treatments, bettered employment outcomes, speedier diagnosis, reduced hospitalisations, upgraded symptom management options, refined knowledge on the causes of MS, and so on.
Communicating this proof via our socials, newsletters, conferences, media and in-person to our audience is part of our DNA.
The obvious challenges are:
Despite these communication challenges, it is imperative that we continue to provide all people with MS, their friends, families, researchers, donors, government and the general public, evidence-based information which is rarely stagnant and is constantly evolving.
Seven years ago, we were not able to convey these messages to our younger audience quite as well as with others who may have been further along the MS journey. Kiss Goodbye to MS was borne and over $7.5 million raised, nearly 100,000 likes on Facebook received, over 15 countries participated and numerous awards won — there is great evidence that our communications to a younger audience has hit the mark. Similarly, there was a great need to convey not only hope but progress for people living with progressive MS. Many years ago, we joined the International Progressive MS Alliance as a managing member with 5 other countries and we now have a global movement dedicated to finding solutions for the approximate 1 million+ people worldwide living with progressive MS. Someone once told me that they were not sure that we would ever see a registered treatment for progressive MS. Hopefully, by this time next year we will have three. But this will only help some. Now, we turn the bedrock of our attention to ensuring that all people with progressive MS have effective treatment options.
We exist simply because there are people living with MS in Australia and research is the conduit for a cure within our lifetime. We take our ability to convey this message seriously and we are thrilled to be nominated for the 2019 ‘PRIME Awards – NGO of the Year’; specifically, in the field of healthcare communications. We may have come a long way but we are focussed on improving even further over the next 15 years.
Conveying progress and breakthrough is always easier once you realise exactly where you have come from. To that end, we are asking our subscribers to provide your opinion on the top breakthroughs or improvements within MS over the last 15 years, so that we can expand and explain these further to our entire audience.
Please send your thoughts to firstname.lastname@example.org