Save Our Sons Duchenne Foundation | Non-profit organisation

Save Our Sons Duchenne Foundation

Phone: 0295546111

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25.01.2022 Have you downloaded or ordered your hard copy of our Duchenne and Becker muscular dystrophy - A guide to NDIS Planning? You can download the PDF by clicking on the link below: https://www.saveoursons.org.au//2020/09/DBMD_NDIS_guide.pdf... To order your free hard copy, please email us at [email protected] Our National Disability Insurance Scheme (NDIS) Information Guide was written by Marguerite Botha, an experienced NDIS Support Coordinator and is specifically catered to families and individuals living with Duchenne (DMD) and Becker (BMD) muscular dystrophies. This is a great resource to guide you with your NDIS planning. #SOSDuchenneFoundation #saveoursons #Duchenne #becker #musculardystrophy #togetherwearestronger

21.01.2022 Save Our Sons Virtual Bricks 4 Kidz event for kids with Duchenne or Becker will be taking place this Saturday the 12th of September. Registrations close tomorrow at 5pm (AEST), if you haven't registered your son or daughter, please do so by then. There will be 3 x 1 hour sessions available (10 spots available per session)... 11am (AEST) - 47 years 1pm (AEST) - 811 years 3pm (AEST) - 12+ years To register, visit www.saveoursons.org.au/events/. #SOSDuchenneFoundation #saveoursons #Duchenne #becker #musculardystrophy #bricks4kidz

21.01.2022 Meet 12 year old Ryan from Bendigo, Victoria. Ryan has Duchenne muscular dystrophy and loves to play video games Thank you Ryan for helping us raise awareness of Duchenne and Becker muscular dystrophy. ... If you have a son or daughter with Duchenne or Becker, send us your video with the below script to [email protected] "Hi my name is (...), I'm (...) years old and I'm from (City/Country). I have Duchenne or Becker muscular dystrophy and I love (your hobby)" #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger #WDAD2020

21.01.2022 Meet 7 year old Harrison from Gold Coast, Queensland. Harrison has Duchenne muscular dystrophy and loves playing hide and seek. Thank you Harrison for helping us raise awareness of Duchenne and Becker muscular dystrophy. ... If you have a son or daughter with Duchenne or Becker, send us your video with the below script to [email protected] "Hi my name is (...), I'm (...) years old and I'm from (City/Country). I have Duchenne or Becker muscular dystrophy and I love (your hobby)" #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger #WDAD2020

20.01.2022 Save Our Sons Duchenne Foundation commissioned Marguerite Botha, an experienced NDIS Support Coordinator, to write a National Disability Insurance Scheme (NDIS) Information Guide specifically catered to families and individuals living with Duchenne (DMD) and Becker (BMD) Muscular Dystrophies. Marguerite currently provides support coordination and specialist and behaviour support for the neuromuscular community in South Australia. The Guide provides detailed information on NDI...S processes, supports and guidelines, as mapped against the DMD and BMD stages, and covers issues such as: Assistive technology including scooters, power wheelchairs, modified vehicles, power beds and pressure care mattresses, and Ankle-Foot Orthoses; Home modifications including minor and major modifications; Health supports definitions of disability-related health supports and exclusions for this category; Therapeutic supports including physiotherapy, hydrotherapy, exercise physiology, speech pathology and use of therapy assistants; Support coordination; and Core supports including assistance with daily life and social and community participation, as well as support to sustain informal supports. The information was developed within the context of DMD and BMD, with supports and processes aligned to the progressive stages of these conditions. This is a great resource for our Australian Duchenne and Becker community. To get your copy, click the link below: https://www.saveoursons.org.au/duchenne-becker-muscular-dy/ To order a free hard copy, please email us at [email protected]

20.01.2022 Save Our Sons will be hosting a Women in Duchenne virtual catch up on Tuesday the 22nd of September at 1pm (AEST) A casual get together for Duchenne and Becker mums, carers, sisters and grandmothers. Registrations close on the 17th of September.... If you would like to register, please email us at [email protected] #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger

19.01.2022 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. Music is affective in promoting emotional wellbeing, boosting creativity and being a source of happiness. Music has also many physical benefits for those with Duchenne and Becker muscular dystrophy, such as enhanci...ng respiratory health, providing a friendly and relaxed environment to develop their gross and fine motor skills, support improvements in speech and enhance social skills and forging friendships. 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. Themes across all age groups include: Music making with technology | Creating, composing and electronics | Vocals and breathing | Co-operative music gameplay The First Term Dates are: Saturday 10th October 2020 to Saturday 12th December inclusive Registrations close Friday the 2nd of October 2020. Please note, this program is only for Australian residents affected by Duchenne and Becker muscular dystrophy. To register, click on the link below: https://www.saveoursons.org.au//nordoff-robbins-group-mus/ #SOSDuchenneFoundation #saveoursons #Duchenne #Becker #musculardystrophy #togetherwearestronger #community

18.01.2022 Meet Patrick from Queensland. Patrick has Duchenne muscular dystrophy and loves to read books about dinosaurs and to play with his cow. Thank you Patrick for helping us raise awareness of Duchenne and Becker muscular dystrophy.... If you have a son or daughter with Duchenne or Becker, send us your video with the below script to [email protected] "Hi my name is (...), I'm (...) years old and I'm from (City/Country). I have Duchenne or Becker muscular dystrophy and I love (your hobby)" #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger

17.01.2022 Meet 10 year old Zayer from Drysdale, Victoria. Zayer has Duchenne muscular dystrophy and loves to play with his best friend. Thank you Zayer for helping us raise awareness of Duchenne and Becker muscular dystrophy. ... If you have a son or daughter with Duchenne or Becker, send us your video with the below script to [email protected] "Hi my name is (...), I'm (...) years old and I'm from (City/Country). I have Duchenne or Becker muscular dystrophy and I love (your hobby)" #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger #WDAD2020

17.01.2022 Meet 5 year old Gabriel from NSW. Gabriel has Becker muscular dystrophy and loves to dance, play soccer, ride his bike and climb! Thank you Gabriel for helping us raise awareness of Duchenne and Becker muscular dystrophy. ... If you have a son or daughter with Duchenne or Becker, send us your video with the below script to [email protected] "Hi my name is (...), I'm (...) years old and I'm from (City/Country). I have Duchenne or Becker muscular dystrophy and I love (your hobby)" #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger

17.01.2022 Meet 2 year old Kane from Perth, Western Australia. Kane has Duchenne muscular dystrophy and loves to dance. Thank you Kane for helping us raise awareness of Duchenne and Becker muscular dystrophy. ... If you have a son or daughter with Duchenne or Becker, send us your video with the below script to [email protected] "Hi my name is (...), I'm (...) years old and I'm from (City/Country). I have Duchenne or Becker muscular dystrophy and I love (your hobby)" #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger #WDAD2020

15.01.2022 Meet 10 year old Ollie from Sydney, Australia. Ollie has Duchenne muscular dystrophy and likes to play the drums! Thank you Ollie for helping us raise awareness of Duchenne and Becker muscular dystrophy. ... If you have a son or daughter with Duchenne or Becker, send us your video with the below script to [email protected] "Hi my name is (...), I'm (...) years old and I'm from (City/Country). I have Duchenne or Becker muscular dystrophy and I love (your hobby)" #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger #WDAD2020

15.01.2022 FINAL CHANCE TO REGISTER! 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. Music is affective in promoting emotional wellbeing, boosting creativity and being a source of happiness.... Music has also many physical benefits for those with Duchenne and Becker muscular dystrophy, such as enhancing respiratory health, providing a friendly and relaxed environment to develop their gross and fine motor skills, support improvements in speech and enhance social skills and forging friendships. 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. Themes across all age groups include: Music making with technology | Creating, composing and electronics | Vocals and breathing | Co-operative music gameplay The First Term Dates are: Saturday 10th October 2020 to Saturday 12th December inclusive Please note, this program is only for Australian residents affected by Duchenne and Becker muscular dystrophy. To register, click on the link below: https://www.saveoursons.org.au//nordoff-robbins-group-mus/ #SOSDuchenneFoundation #saveoursons #Duchenne #Becker #musculardystrophy #togetherwearestronger #community

15.01.2022 The Australian Neuromuscular Disease Registry (ANMDR) is an Australia-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from adult and child patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies. Save Our Sons Duchenne Foundation have played a critical role in the funding and development of the Australian Neuromuscular Disease Registry, which inc...orporates the content of our former Australian Duchenne Registry. We urge all Australians living with Duchenne and Becker muscular dystrophy to register. If you are not sure whether you or your family members are registered please check directly with the Registry. By having a database of patients with Duchenne and Becker muscular dystrophy, clinicians and researchers are better able to understand the underlying history of these conditions and how best to monitor and treat them. Also of critical importance, recruitment into clinical trials and finding clinics and services will become more easily accessible through the Registry hub. Details and information about clinical trials will be readily available and having a registered neuromuscular hub can increase our ability to attract more clinical trials to Australia. Help us, help them together we can make a difference. Click the link below to find out more about the Registry and how you can register today. https://www.australiannmdregistry.org.au/about-us/ #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy

14.01.2022 The Save Our Sons Duchenne Foundation Nurses Program was developed to ensure Best Practice clinical care for all with Duchenne and Becker muscular dystrophy and facilitate bringing clinical trials to Australia and coordinate Australian-based clinical trials for persons with Duchenne and Becker muscular dystrophy. The Nurses have solid knowledge of each patient’s history, and also offer significant support to families navigating the complicated and difficult journey of cari...ng for a child with Duchenne or Becker muscular dystrophy. They also provide specialist knowledge and experience with Duchenne and Becker muscular dystrophy to the multidisciplinary teams within hospitals and assist families to join the Australian Neuromuscular Disease Registry (ANMDR) to ensure critical and up-to-date data is available regarding the Duchenne and Becker population in Australia. The Royal Children’s Hospital in Melbourne have over 570 neuromuscular (NM) patients, with the number of patients with dystrophinopathies (Duchenne and Becker) being just over 200 of this total. The Save Our Sons Duchenne Foundation Board are very pleased to announce that they have allocated funding of $253,430 over three years towards a neuromuscular research nurse (Year 1 $92,924.37; Year 2 $84,476.70; Year 3 $76,029.03). The Royal Children’s Hospital Melbourne neuromuscular clinic operates weekly. Patients are seen in a multidisciplinary format. The primary focus of this multidisciplinary clinic is best practice clinical care. A secondary focus is ensuring all children have access to new treatments for their condition as soon as these treatments become available in clinical trials or as proved therapies. Many clinic staff have both clinical and research roles, and many children are enrolled in clinical trials. During clinic visits clinicians always try to discuss available options for children who might be suitable for clinical trials and other research studies. Roles part-funded through the Save Our Sons Duchenne Foundation in this neuromuscular clinic, in addition to the neuromuscular research nurse, include the neuromuscular clinical trials staff specialist neurologist and the clinic genetic counsellor. The Royal Children’s Hospital in Melbourne are incredibly grateful for the support provided by the Save Our Sons Duchenne Foundation towards the roles of the neuromuscular research nurse, the neuromuscular clinical trials staff specialist, and the clinic genetic counsellor. To read the full statement, please click on the link below: https://www.saveoursons.org.au/save-our-sons-duchenne-foun/

14.01.2022 "A Guide to Duchenne muscular dystrophy" is a great resource for families affected by Duchenne or Becker muscular dystrophy. This internationally acclaimed book is now available free of charge through Save Our Sons Duchenne Foundation. To order your copy, please contact our Telehealth Nurse, Michele Cowie on 1300 798 328 or at [email protected]... #SOSDuchenneFoundation #saveoursons #Duchenne #Becker #musculardystrophy #togetherwearestronger

11.01.2022 The Save Our Sons Duchenne Foundation Nurses facilitate bringing clinical trials to Australia and coordinate Australian-based clinical trials for Duchenne and Becker muscular dystrophy. Importantly, they also provide coordinated care for Duchenne and Becker families, thereby improving standards of care across Australia. The Nurses coordinate with Specialists to ensure that families attend all the necessary appointments in an efficient manner and at the recommended intervals, ...in turn reducing the number of times families are required to visit the hospital. This will ensure optimal care is provided and will reduce the level of stress that families endure. The Nurses have solid knowledge of each patient’s history, and also offer significant support to families navigating the complicated and difficult journey of caring for a child with Duchenne or Becker muscular dystrophy. The Nurses also provide specialist knowledge and experience with Duchenne and Becker muscular dystrophy to the multidisciplinary teams within hospitals. They also assist families to join the Australian Neuromuscular Disease Registry (ANMDR) to ensure critical and up-to-date data is available regarding the Duchenne and Becker population in Australia. Save Our Sons are pleased to announce that the Board have decided to allocate funding of $150,000 over three years (Year 1 - $60,000; Year 2 - $50,000; and Year 3 - $40,000) towards a Level 2 Clinical Nurse- Neuromuscular for the Perth Children’s Hospital. The jointly funded position has been filled by an experienced Clinical Nurse who works in close partnership with the Clinical Lead of the Neuromuscular (NM) Service at Perth Children’s Hospital. This funding by Save Our Sons will also contribute to the establishment and implementation of clinical trials for Western Australia’s Duchenne and Becker community. Save Our Sons are proud to support our Duchenne and Becker community in Western Australia through this important and critical program. To read the full statement click on the link below: https://www.saveoursons.org.au/sosdf-nurses-program-perth-/ #SOSDuchenneFoundation #saveoursons #Duchenne #Becker #musculardystrophy

10.01.2022 On Thursday the 26th of November, Save Our Sons Duchenne Foundation will host an information session about female carriers for our Duchenne and Becker community. Our guest speakers will include Robin Forbes (Neuromuscular Genetic Counsellor) and Dr. Louise Crowe (Psychologist and Research Fellow for Neuromuscular Disorders) from The Royal Children’s Hospital in Melbourne. The session will be of interest to those that wish to gain an overview or a better understanding of what ...it means to be a female carrier, carriers types, carrier symptoms, testing, and whether being a carrier presents additional burdens in daily activities. If you would like to participate in this session, please email us at [email protected] with your full name and any questions you may have for our hosts by Monday 23rd of November 2020.

10.01.2022 As reported recently, the Federal Government has established a Parliamentary Inquiry into new drugs and novel medical technologies. SOSDF had been advocating for such an Inquiry over many months, conveying our community’s feeling that current bureaucratic, regulatory and cost impediments are causing ongoing problems with the approval of clinical trials in Australia thus undermining efforts to ensure Australian children have access to the next phase of clinical trials for new... gene therapies onshore, as well as the approval process for new drugs and novel medical technologies not being efficient enough and leading to significant delays in effective treatments reaching our shores. We understand how important these issues are to the Duchenne and Becker community in Australia. Our advocacy work, including the recent launch of our landmark keynote report in Canberra plus other important and impactful SOSDF activities and programs, has opened a number of doors for our community and has now given us a priceless opportunity to influence and shape the outcomes of the Inquiry process. However, we must move quickly as the submission process closes on 13 October 2020. Importantly, SOSDF know that it is your personal stories that will move and shift politicians most. If you are prepared to provide us with your story going to your family’s (and child/ren’s) personal, lived experiences and frustrations with the current research, clinical trial system, and treatment approval processes then please contact us with your details and we will arrange to call and interview you. Alternatively, you can email us 300 to 500 words and we will work to include this (where possible) in our submission - if you don’t want to be identified as part of that process please let us know. Emails can be sent to [email protected] and please place Parliamentary Inquiry in the subject line. We would require your stories by 4pm, Friday the 25th of September. Your personal and lived experiences will make all the difference. Your stories will ensure that our submission remains a living, breathing document which cannot be simply ignored or discarded by politicians and bureaucrats. To read the full statement, click the link below: https://www.saveoursons.org.au/we-need-your-stories-parlia/ We look forward to hearing from you and we thank you in advance for your support. #sosduchennefoundation #saveoursons #Duchenne #Becker #musculardystrophy #togetherwearestronger

09.01.2022 SOSDF thanks the Duchenne and Becker community for your active participation and critical contribution to our wide ranging submission to the 2020 Review of the Disability Standards for Education 2005. Our submission may be downloaded on our website under the Latest News tab at www.saveoursons.org.au. If you would like a hard copy posted to you through the mail please email [email protected]. Your insights and lived experiences of the education system have provided us wi...th invaluable material to put forward to the Federal Government. They have also enabled us to make a number of recommendations based on the issues that you identified throughout our consultation. In summary, while these Disability Standards appear to have made some difference and equalised educational opportunities amongst all students (whether they have a disability or not), TOO much still depends on your advocacy as parents/carers, your lines of communication with the School and the particular School Principal in question - and their commitment or not to inclusive practices. SOSDF is also concerned by increasing demands which are placed on teachers and teachers aides who may be too overstretched or lacking in the requisite training to provide the individualised attention required for young people with special needs. #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #education

09.01.2022 Today is Genetic Counsellor Awareness Day. A genetic counsellor provides information to individuals and families about genetic conditions. That may involve learning about how they are inherited or who in the family may be at risk of developing a particular condition. Genetic counsellors also provide emotional and practical support to help people adjust to living with, or being at risk for, a genetic condition.... Genetic counsellors play a crucial role in the journey of a Duchenne or Becker family as they are able to educate them about the inheritance of the condition, the chance of recurrence and family planning options. Genetic counsellors can also help coordinate genetic testing for potential carriers and assist in interpreting those results. They can also provide supportive counselling, and serve as patient advocates. We at Save Our Sons understand the important and supportive role a Genetic Counsellor plays for our Duchenne and Becker families and currently contribute funds towards the genetic counsellor role in the neuromuscular clinic at The Royal Children’s Hospital in Melbourne. Source: https://ahpa.com.au/allied-health-pro/genetic-counselling/.

07.01.2022 Save Our Sons Duchenne Foundation will welcome Shadow Minister for the National Disability Insurance Scheme (NDIS), the Hon Bill Shorten MP, and Senator Deborah O'Neill to talk about the challenges being faced by the Duchenne and Becker community in Australia as they try and secure services, equipment and assistance through the NDIS. Join the Save Our Sons Facebook Live Event from 1:00pm to 2:30pm on Save Our Sons Facebook Page https://www.facebook.com/SOSDuchenneFoundation A... few issues relating to the NDIS from our keynote Report, Living with Duchenne & Becker in Australia: Supporting Families waiting for a Cure: - A cost-of-disease study undertaken for this report shows that Duchenne in particular is associated with significant lifetime health and social care costs. It is estimated that these can total up to $2.25 Million for a child living until their mid-thirties. In addition, informal care costs total up to $630,000 in terms of reduced female participation in the workforce. - On average, the financial cost of Duchenne over the lifetime of a child born today can be expected to be $1.3 Million with the cost for a child living to their mid-thirties of $2.88 Million. - A remarkable 16.6 per cent of respondents to a survey of families completed for the report stated that the $22 Billion NDIS had worsened their situation, and a further 31.1 per cent said that the scheme had neither improved nor worsened their situation an astonishing 47.7% in total. Delays in receiving equipment was a key issue raised by those indicating that the NDIS had worsened their situation. - Families reported high out-of-pocket medical costs, ranging to $1800 per month. Out-of-pocket costs were much higher in NSW than in other States and Territories. Out-of-pocket costs in NSW were $430.43 per month on average, compared to $250 per month on average across the other States and Territories. - A high proportion of parents, being 23.5 per cent, have more than one child with Duchenne or Becker, with the majority having two children with Duchenne or Becker. Got a question? Email the Save Our Sons team at [email protected], questions submitted by 4pm, Wed 16th of September 2020 will be posed to our special guests.

06.01.2022 Meet 7 year old twins Riley and Cooper and their 2 year old brother Logan from Melbourne. Riley, Cooper and Logan have Duchenne muscular dystrophy and they love to play video games. Thank you Riley, Cooper and Logan for helping us raise awareness of Duchenne and Becker muscular dystrophy. ... If you have a son or daughter with Duchenne or Becker, send us your video with the below script to [email protected] "Hi my name is (...), I'm (...) years old and I'm from (City/Country). I have Duchenne or Becker muscular dystrophy and I love (your hobby)" #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger #WDAD2020

06.01.2022 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 strea...ms, 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. To view the survey results, click the link below: https://www.saveoursons.org.au/sosdf-enhancing-quality-of-/ #sosduchenne #Duchenne #Becker #EQOL #Survey #Community

03.01.2022 SOSDF would like to thank all parents and carers who recently participated in our consultation process reviewing health and hospital services in rural, regional and remote NSW. Your valuable input and insights have enabled SOSDF to develop an impactful and comprehensive submission. This submission has now been submitted to the members of the NSW Upper House committee who are charged with carriage of the Inquiry. Our collective response on your behalf reflects your views and ...has identified a number of key issues including but not limited to: the need for the NSW Government to fund outreach neuromuscular services to rural and remote NSW; the need to provide more education and awareness on Duchenne and Becker muscular dystrophy to GPs and other health practitioners in the rural health system; inadequacies in the levels of travel subsidies currently available under IPTAAS when families are required to travel to major metropolitan centres for treatment/services; the need to make clinical trials accessible to Duchenne and Becker families living in rural and remote NSW; expansion of telehealth services to provide greater level of support to those affected by Duchenne and Becker, their parents and carers; establishment of ongoing consultation mechanisms between NSW Health and Duchenne and Becker families living in rural and remote NSW -to ensure your voice and needs are heard. A full copy of this submission can be found by clicking the link below: https://www.saveoursons.org.au/nsw-parliamentary-inquiry-r/ Finally, SOSDF has pushed for participation in any public hearings that may arise once all submissions have been considered. #sosduchenne #saveoursons #Duchenne #Becker #musculardystrophy #togetherwearestronger