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STRONGER TOGETHER the opportunity to connect in real life with a huge number of individuals and families on a similar journey. As one speaker at the conference put it:“None of us wants to join this family — but once you’re in it, you're surrounded by one of the most welcoming and caring communities you could hope for.” Some of the kids’ highlights were the family PJ party and movie night, and a magical evening at Disneyland with other conference attendees. They also really enjoyed the children’s program, run by an amazing team of volunteers, offering loads of fun with games, crafts and live shows. It was really special to see our boys connecting with other kids in an environment where wheelchairs and other mobility aids were completely normal — and where checking out each other’s “cool wheels”was just part of the fun. It was also a valuable experience for them to meet others affected by SMA in a wide range of ways. This opened the door for honest questions in a safe space, and helped deepen their understanding of what life with SMA can mean for different people. FromMum and Dad’s perspective, we gained many valuable insights. There were a huge range of conference sessions and workshops, and a huge amount of information to take in on topics such as advances in SMA research and emerging drug therapies, orthopedic care, adaptive sports, building resilience against burnout, and technology to make life easier. A highlight for us was a hydrotherapy session in the pool with Elliot — a hands-on experience that gave us practical ideas to try back home. Hearing firsthand from researchers and clinicians helped us better understand how treatments are evolving — including new combination therapies being developed to restore muscle function and strength. The US has been ahead of New Zealand in providing access to disease- modifying treatments and newborn screening for SMA. It was wonderful to see children who had been diagnosed and treated years ago as newborn babies now running around at the conference, without any visible symptoms of the disease. It was a powerful reminder of what’s possible when early diagnosis and timely treatment are provided, and it reinforced the importance of continuing to advocate for access to world-class treatment options for all New Zealanders with SMA. We’re incredibly thankful to the MDA and the Bradley Jenkin Memorial Fund for making this experience possible. If you or your whānau ever have the opportunity to attend a similar event, we wholeheartedly encourage you to go. The knowledge, connections, and support we gained have been invaluable and will continue to help us as we navigate life with SMA. The Bradley Jenkin Memorial Fund helps MDANZ members with a neuromuscular condition receive funding for access opportunities and specialised resources that enable them to achieve freedom. The fund has helped members purchase specialised sports equipment, participate in sporting events, it has contributed towards the cost of obtaining a mobility dog, provided mobility equipment, and assisted with career development such as university and course fees. Applications close: January 31 • April 30 • July 31 • October 31 The Bradley Jenkin Memorial Fund For criteria, info and to apply, go to www.mda.org.nz > What We Offer Funds must be spent within three months.