Friedreich's Ataxia in the Spotlight
Public awareness is a critical component of our mission at FARA NZ. We are encouraged to see recent media coverage that brings Friedreich's Ataxia (FA) into the public conversation. The stories of two young New Zealanders, Carrie Kunicich and Flynn Mitchell, effectively illustrate the challenges faced by our community and highlight the proactive efforts underway to improve quality of life and support vital research.
The Importance of Specialised Care: Carrie Kunicich's Journey
The recent experience of 13-year-old Carrie Kunicich from Whangārei demonstrates the significant impact that specialised medical care can have for individuals with FA. A planned trip to consult with a leading Friedreich's Ataxia specialist in Melbourne was nearly derailed by travel disruptions. However, with determination and community support, the trip was successful.
The consultation resulted in a key change to her treatment plan. A new medication has effectively controlled the muscle spasms that were impacting her sleep, leading to a tangible improvement in her daily life. Carrie's story serves as a clear example of how access to expert knowledge is essential for managing the complex symptoms of FA.
Read the article here.
Community Fundraising for Research: "For Flynn"
In a separate but equally important development, the community around Flynn Mitchell organised to support the search for a cure. Flynn’s friends and family launched the "For Flynn" team as part of the Lend Us Some Muscle campaign.
The initiative was highly successful, ultimately raising $31,211 and surpassing its original $30,000 goal. This is a significant, proactive achievement, demonstrating how community action can be channelled to provide meaningful contributions towards scientific advancement and clinical trials for Friedreich's Ataxia.
Read the article here.
The Path Forward
The media attention on these events is beneficial for the entire Friedreich's Ataxia community. These stories not only raise the public profile of FA but also highlight two key pillars of our work: ensuring access to the best possible care and funding the research that will lead to effective treatments and a cure.
FARA NZ continues to support families and advocate for the resources needed to improve the lives of those living with Friedreich's Ataxia. The progress demonstrated in these stories is a direct result of dedicated community and professional efforts, reinforcing the importance of our shared mission. We appreciate the continued support from our community as we work towards a future without FA.