SOSDF Enhancing Quality-of-Life (EQOL) Program

Due to the full implementation of the National Disability Insurance Scheme (NDIS) coming to fruition across all Australians States and Territories, where participants receive accurate advice and the services of experienced and knowledgeable planners, the NDIS Plans for persons with Duchenne and Becker muscular dystrophy should incorporate most of the relevant items which they previously might not have been eligible for under State and/or Commonwealth funding and program streams, which includes all of the items which have been provided under the SOSDF EQOL program.

 

This presented an opportunity for the funding previously allocated by SOSDF towards the EQOL program to be re-allocated towards other meaningful, valuable, and impactful services for the Duchenne and Becker community in Australia.

 

In considering how best to re-allocate funding from this program to other services that will achieve maximum benefit for the Duchenne and Becker community in Australia, SOSDF engaged directly with the Duchenne and Becker community in Australia through a survey and phone calls in order to ascertain directly from the community what their genuine and identified needs are and to take them along on the journey, with SOSDF staff also researching programs being delivered by like-minded organisations across the world.

 

Key Enhancing Quality of Life Community Survey Results

 

  • Should Save Our Sons Duchenne Foundation consider re-allocating funds towards an Adult Transition Coordinator?

 

85.71% of respondents - YES.

 

Areas of interest for the potential Adult Transition Co-ordinator to support the notion that a gap exists in medical services for adults with DMD/BMD:

 

  • Medical services
  • Independent living
  • Social activities
  • Further education
  • Training and employment
  • NDIS coordination

 

  • Should Save Our Sons Duchenne Foundation consider re-allocating funds to a Duchenne / Becker specific NDIS Co-ordinator?

 

78.57% of respondents - YES

 

  • Should Save Our Sons Duchenne Foundation consider re-allocating funds to research about carriers and females with Duchenne / Becker?

 

64.29% of respondents – YES

 

  • Should Save Our Sons Duchenne Foundation consider re-allocating funds to professional Telehealth Therapy services?

 

60.71% of respondents - NO

 

SOSDF Board endorsed initiatives

 

  1. A pool of essential equipment

 

To be funded and kept by SOSDF to loan out to Duchenne and Becker families in Australia as they wait for their approved equipment to be delivered through the NDIS, with significant time delays being experienced between approval and delivery dates from the NDIA, to ensure that persons with Duchenne or Becker are not adversely affected in those interim periods.

 

The pool of essential equipment will consist of:

  • Cough assist machines
  • Portable ventilators
  • Mobility scooters

 

  1. Nordoff Robbins – Group Music Therapy

Music therapy has been proven to be an effective tool to promote emotional wellbeing in patients in many ways, such as boosting creativity, reducing loneliness and being a source of happiness. In patients with Duchenne and Becker, music therapy can also have physical benefits, such as enhancing respiratory health, and it can provide a friendly and relaxed environment for patients to develop their gross and fine motor skills and support improvements in speech. Social skills are improved, and friendships are forged.

Nordoff Robbins, one of the world leaders in this field, have developed a range of music-based activities for patients with Duchenne and Becker, with the program to be delivered through an online and interactive group approach easily accessible by all participants. This represents an excellent community-building and well-being initiative. Save Our Sons will fund 4 x 10-week terms (40 weeks) for our community.

 

  1. Alex Scollard Memorial PhD Scholarship

Alex Scollard was a true inspiration and great role-model for the Duchenne and Becker community in Australia and worked tirelessly towards the most worthy cause of enhancing the quality of life for all with Duchenne and Becker and finding a cure.

 

Save Our Sons will fund the new Alex Scollard Memorial PhD Scholarship in honour of Alex.

 

The PhD Scholarship involves a yearly stipend over a period of three years, the expected duration of a PhD in the field, being $30,000 per annum for each of three years (a total of $90,000).

 

The following factors were considered in relation to the best potential applicant:

 

  • An aspiration to practice as an adult neurologist with a genuine interest in the neuromuscular field, particularly in Duchenne and Becker muscular dystrophy;

 

  • Ongoing commitment to finding effective treatments to save the lives of individuals suffering from genetic muscle disease and contribute to the scientific efforts to find a cure for Duchenne and Becker muscular dystrophy;

 

  • Embark on a PhD project that will aim to rigorously test gene therapy delivery systems that may rescue and repair damaged muscle and aim to provide a strong scientific evidence base for the development of a potential therapeutic that may eventually be applied in human research;

 

  • Help to bridge the gap between clinical neuromuscular practice and translational scientific research, and help through work at a neuromuscular clinic and continue to contribute to clinical work during and after the PhD;

 

  • Contribute to an area that does need further attention, being the transition period from paediatric to adult care, which can be tumultuous. Help to establish some clinical guidelines that may be used during this period to smooth out the process.

 

Note: Save Our Sons recently agreed to Sponsor a Neuromuscular Clinical Trials Specialist position at the MCRI (Royal Children’s Hospital Melbourne) as part of the research program developed to ensure “Best Practice” clinical care for all with Duchenne and Becker muscular dystrophy and to support bringing clinical trials to Australia. This SOSDF funding will enable the continuation of the existing neuromuscular clinical trials role, which has improved individual support and care for all neuromuscular research participants. This position is having a very positive impact, aimed primarily at the younger patient cohort. A separate announcement will be made in this regard in the near future.

 

  1. Duchenne and Becker specific Adult Transition and NDIS Co-ordinator

The NDIS Co-ordinator role will be recruited first, and will aim to empower and support children and adults who have Duchenne and Becker and their families to maximise their:

 

  • Quality and enjoyment of life
  • Potential
  • Positive relationships within the community, and
  • Navigate through the complexities of the NDIS and with the NDIA.

 

Objectives will involve:

  • To provide responsive, individualised services and support for each person and family consistent with the relevant legislation, their proposed NDIS plan, any support coordination policy, quality framework, and funding guidelines;
  • To promote empowerment, choice and control and community inclusion of people with Duchenne and Becker and their families, consistent with their proposed NDIS plan.

 

An Adult Transition Co-ordinator position will be recruited six-months after the recruitment of the NDIS Co-ordinator.

 

These initiatives align with the SOSDF Five-Year Strategy, and with needs identified through the keynote McKell Institute / Equity Economics Report and direct consultation with, and feedback from, the Duchenne and Becker community in Australia. These measures further solidify and enhance the positive impact of SOSDF work.

 

In addition, as communicated recently, in the near future announcements will also be made in relation to, amongst other impactful measures, the following:

  • Improvements to our impactful Nurses Program
  • A new NDIS Information Package
  • NDIS forums specifically targeted at DMD and BMD, hosted by key figures
  • Research and work pertaining to:
  • Carriers of DMD / BMD
  • Transition of Care
  • Adults with DMD / BMD
  • A Neuromuscular Fellowship
  • A Clinical Trials Finder as part of a proposed Clinical Trials Hub
  • A DMD / BMD Expo.

 

Thank you for your ongoing support.

 

Together we are stronger!!!

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