People living with neuromuscular conditions can continue accessing support services in SA!
People living with muscular dystrophy and other neuromuscular conditions can continue accessing critical support services in South Australia they were once at risk of losing thanks to support from The Hospital Research Foundation (THRF) and its popular Hospital Research Home Lottery.
A $200,000 grant has been provided to I Can Jump Puddles, a leading service provider for South Australians with a disability who are participants of the National Disability Insurance Scheme (NDIS).
Led by physiotherapist Sam Boag, I Can Jump Puddles took over client services from Muscular Dystrophy South Australia after the charity went into administration in 2019.
“Thanks to THRF, I Can Jump Puddles is able to provide early intervention and family support for clients under 65 years with muscular dystrophy and neuromuscular conditions who are languishing in the gap that now exists between diagnosis and the availability of NDIS funding,” Sam said.
“The funding is being used to support children and adults who are newly diagnosed to gain access to the NDIS. Significant planning is undertaken to ensure that a person living with a neuromuscular condition receives an NDIS plan that meets their needs.
“Thanks to THRF’s grant, I Can Jump Puddles staff are able to support families and individuals throughout this process, while also helping them to understand what the future might look like.”
The funding is also being used to support the award-winning innovative program Now and Next, supporting family members of children who are newly diagnosed to embrace their child’s strengths and set and achieve goals.
“People diagnosed and their families are in limbo after a diagnosis such as muscular dystrophy. They don’t know who to seek help from and are unsure of the next steps,” Sam explained.
“Our Now and Next group program helps family members to develop skills to achieve positive outcomes for their child, family and themselves and creates ongoing peer support.
“It is a critical support service while they wait for an NDIS assessment, connecting them with families who can relate to how they are feeling.”
We are stronger together
THRF CEO Paul Flynn said that as the charity for every South Australian, he didn’t hesitate to agree for THRF to support the neuro-muscular community.
“We were saddened by the announcement of another local charity closing their doors and felt it was our duty to fight for the community,” Paul said.
“A diagnosis of muscular dystrophy is heartbreaking and it is vitally important we help support these families and individuals at a time they need it most through funding to I Can Jump Puddles.
“We thank our donors and ticket buyers in the Hospital Research Home Lottery for their ongoing support, allowing us to continue to provide lifelines to vulnerable groups in the community.”
About muscular dystrophy and neuromuscular conditions
Muscular dystrophy is a neuromuscular, genetic condition which results in the progressive deterioration of muscle strength and function. Children can go from meeting normal motor milestones e.g. walking and crawling, to gradually losing the ability to do these things as they get older.
There are many other types of neuromuscular conditions, affecting people of all ages. While some forms of neuromuscular conditions occur in babies or children, others appear in late adolescence or adulthood. It is estimated that there are more than 20,000 people in Australia who have some form of neuromuscular condition.
Clinicians and researchers across the globe are learning more about the causes of muscular dystrophy and various treatments are being trialled to stop the progression of the condition. Early diagnosis, keyworker, therapy and support (from providers such as I Can Jump Puddles) play a key role in increasing a person’s quality of life.