The recognition of Leukodystrophy Awareness Month seeks to raise public consciousness about the impact of leukodystrophy conditions which occur in approximately 1 in 7,700 births overall. Many forms of these disorders can lead to significant developmental challenges or even premature mortality, with estimates indicating that nearly 30% of affected children do not survive past their fifth birthday. By proclaiming an awareness month, the resolution aims to highlight the need for further research and better clinical care for affected individuals.
Summary
Assembly Concurrent Resolution No. 138 (ACR138), introduced by Assembly Member Santiago on September 13, 2017, aims to proclaim September 2017 as Leukodystrophy Awareness Month. The resolution honors individuals, particularly Clara Maureen McLean and Lindy Suhr, who have been affected by the rare and debilitating diseases identified as leukodystrophies. These conditions are a severe group of genetic disorders that primarily affect the white matter in the brain, often impacting infants and children most severely.
Conclusion
Overall, ACR138 reflects a commitment to not only recognizing the struggles faced by those with leukodystrophy but also emphasizes a collective push towards enhancing awareness and advancing research in hopes of finding cures. Such legislative actions, while ceremonial, play a crucial role in galvanizing community support, encouraging donations, and prompting further discussion on public health strategies surrounding rare diseases.
Contention
While the resolution does not modify any state laws directly, its implications could resonate within the healthcare community by drawing attention to the urgent need for research funding and supportive services for families impacted by leukodystrophy. Advocates for this cause may argue that legislative recognition is a stepping stone for greater support and initiatives aimed at improving diagnosis, treatment, and overall quality of life for children with these conditions. The passage and promotion of such a resolution can also foster collaboration between state entities and national organizations in the fight against rare diseases.