World Duchenne Awareness Day – September 7
Together we win
Together we are family
Together we are always close
Together we explore the world
Together we are stronger
Save Our Sons are very proud to promote and support World Duchenne Awareness Day on September 7. On this day we and like-minded organisations around the world, on behalf of our communities, raise awareness for Duchenne and Becker muscular dystrophy (DMD and BMD) around the globe. As in every year, there is a special theme that deserves more attention, and you would have noted through our social media that this year the theme is Duchenne and the brain.
Save Our Sons will keep you updated as to participation on this important day and how you can support and be involved. Follow our social media closely in this regard!
Together we are stronger
The current COVID-19 pandemic is profoundly impacting our daily lives. It changes the way we spend time, altering our habits. Although it is changing our daily life, it cannot overrule our projects and voices.
As a community, we are very aware how strongly this affects us in terms of isolation, facing emergencies and adaptation. We are familiar with words such as fear, pain and distance. However, we are trying to turn fear into hope, pain into resilience, and distance into closeness.
This World Duchenne Awareness Day 2020 we will share a message that many people have experienced and are still experiencing: Together we are stronger. Even after the emergency will finish, our cause will still be there, our engagement is still there, and we need every single person to be involved.
At Save Our Sons we have a committed team that works hard every single day towards achieving our key objectives and we always put the best interests of the entire Duchenne and Becker community in Australia as a whole first.
During the COVID-19 pandemic we have worked harder than ever before, particularly in relation to our advocacy work, and every ounce of our spirit and strength goes towards achieving meaningful outcomes and maximum impact for our Duchenne and Becker community. In addition to our significant network of supporters, key members of the research and scientific community, and our army of dedicated volunteers, we are best informed by our wonderful close-knit community, our family, and we are privileged that amongst our great team at Save Our Sons we have three parents with lived experience who provide great and valuable insights every minute of the day.
Apart from launching our Five-Year Strategy recently, we are also about to launch our Keynote Report on 1st September at Parliament House in Canberra hosted by twenty Ministers, Senators and Members of the Commonwealth Parliament. Due to COVID-19 restrictions the physical arrangement of the event may have to be changed at short notice, but the Report will still be launched on the day.
Over the course of the next few months, and into the New Year, we will also be announcing positive news in relation to:
- The reallocation of funding from the EQoL program to other impactful services and measures to directly benefit our community
- A new NDIS Information Package
- NDIS forums specifically targeted at DMD and BMD, hosted by key figures
- A potential Commonwealth Senate Inquiry into Rare Diseases
- Research and work pertaining to:
- Carriers of DMD / BMD
- Transition of Care
- Adults with DMD / BMD
- A PHD Scholarship specifically for DMD / BMD
- Emergency Care Cards
- An Educational Plan
- A Community Outreach Program
- A DMD / BMD Expo
- Work towards a “DMD House”
- Updated Website and Merchandise
- Updated Informational Collateral
- Webinars and Podcasts
- Improvements to our impactful Nurses Program
- A Neuromuscular Fellowship
- A submission for the 2020 Review of the Disability Standards for Education
- The potential for Group Music Therapy for DMD/BMD – online and interactive, and
- NDIS Support and Facilitation.
As we noted last week, we are always advocating stridently and daily towards objectives which include:
- getting treatment earlier
- getting the care that is needed
- funding future and emergent therapies
- improving access to clinical trials,
- and streamlining the domestic approval processes for medications and treatments that have been approved in other jurisdictions such as the USA or in Europe.
This includes regular meetings with pharmaceutical companies, with key public servants across the tiers of government, with influential decision-makers at the highest levels of elected government, and close consultation and engagement with key clinicians and medical experts, with researchers, and most importantly our community. We are making inroads in our quest. We have the attention of key decision-makers and influencers, we are in open and serious ongoing dialogue with them, and we are working very hard to achieve and secure meaningful outcomes for our community.
Truly, together we are stronger.