From the Desk – May 2013

Watching the installation of our historic campaign billboard in the Café MD area by the expert crew from Signcraft, provided an opportunity for me to reminisce and reflect over this first major foray into promoting MD to the masses.

What also occurred to me was just how young Ryan looked then and the amazing young man he has since matured to and become.

In the time from then to now, Ryan has been the go to for publicity, media interviews and any opportunity to promote and advance the MD cause. Much to his chagrin, he’d had enough of this frequent ‘call to arms’ years ago. So, was I exploiting him, was I showcasing him or was it that in the absence of any other volunteers he became by default, MDA’s ‘poster child’.

Certainly there were no willing volunteers within the MD community, or at least I certainly was not aware of any. And, on more than one occasion I had heard how some members of the MD community did not want to be showcased as if in a ‘fish bowl’.

Thus the conundrum for me, the need to garner more resources through awareness programs, which unashamedly focused on the pediatric aspects of Duchenne MD, instead of adult variants of MD. The community-at-large responds more positively to children affected by various disorders versus adults. One only has to look at how the various childrens’ hospitals market their fundraising.

Fortunately today, a number of families who are new additions to the MD community are far more willing and responsive to the need to showcase MD and have participated in a number of media opportunities.

This has taken the pressure off Ryan, but even today with my imminent departure for the trek of the Atlas Mountains in Morocco through ChallengeMD! 2013, I am constantly asked to have Ryan featured in media interviews and pictorial opportunities. While chatting with Ryan about the latest media request, he informed me (as sons subtlety tell their fathers) that he felt exploited, be it for a worthy cause but nevertheless exploited.


Boris M Struk

May 2013

Showcasing requires putting it out there so the wider community has awareness of MD, an understanding of the MD community and are reminded of our successes. The old adage that ‘success breeds success’ is true, especially when resources are tight.

I reflected on this for some time and with each recount I tried to balance the needs of our MD community against any unintentional exploitation. The outcome being that ‘I am not sure!’ Does the outcome justify the means?

MD requires a higher profile so greater resources can be deployed in service provision, respite programs and important clinical and bench research. With the recent filling of our PR & Communications position we will become more active in the promotion of MDA. However, this will require members of the MD community to step up to the plate and provide us the face to achieve this on behalf of the MD community.

I invite families to discuss among themselves whether they would be prepared to assist the MD community in showcasing MD to the wider community. Participation rates would be in accord with client consent and availability. The level of participation is decided by the client who can withdraw at any time.

The public have a right to know that MD research is on-going and seeks to provide cures and treatments.

The public have a right to know how families with MD confront so many issues on a daily basis just to maintain family and normality of life.

The MD community has a right to tell their story.

The MD community has a right to not be exploited.

I invite your feedback and expressions of interest to assist with showcasing MD without exploitation of our community.

The tough road ahead!

By the time you read this Messenger, together with a dedicated team of trekkers, I will be most likely half way up Mt Toubkal in the Atlas Mountains in ChallengeMD! 2013 Morocco. Through these challenges commencing with the historic cycle from North to South Vietnam in 2006, we have raised more than $2 million for MD.

This extraordinary fundraising would not have been possible without the support of the business and corporate sector, members of the public and members of the MD community. I am unashamedly asking for your support once again. Consider sponsoring our efforts on your behalf. I invite you to visit The Home of MDA at and follow the links to the ChallengeMD! 2013 Morocco page and sponsor one of the trekkers. We could certainly do with your support and encouragement. Believe me, sponsorship $$$s are a great incentive. In this instance, the trekkers do not feel exploited.

If you are up bright and early on the morning of the 9th May, I shall be making a live cross to Ross & John on 3AW’s breakfast program. I invite you to tune in to me gasping for air while seeking the listeners’ support and sponsorship.

Until next time,