Louisiana Senate Bill SCR110

Louisiana 2015 Regular Session

• Introduced: 5/21/15
• Passed: 5/25/15
• Engrossed: 5/26/15

Caption

Designates May 5, 2015, as Rare Disease Awareness Day in Louisiana in honor of Bailey Caroline Durham.

Impact

The resolution underscores the significance of advocacy for individuals with rare diseases and the importance of raising awareness about their needs. By formally designating a day dedicated to acknowledging rare diseases, the state aims to foster a greater understanding and recognition of these conditions among its citizens. This kind of awareness can lead to increased support for related legislation and healthcare provisions, enhancing resources available for affected individuals and their families.

Summary

SCR110 is a Senate Concurrent Resolution that designates May 5, 2015, as 'Rare Disease Awareness Day' in Louisiana to honor Bailey Caroline Durham, a notable figure who exemplified the struggles faced by individuals with rare diseases. This resolution recognizes the impact of rare disorders, highlighting that approximately thirty million Americans and six hundred thousand Louisianians are affected by such conditions. Bailey, specifically, had Ponto Cerebellar Hypoplasia, a rare neurological disorder, which necessitated constant care throughout her life, thereby bringing attention to the challenges faced by patients and their families dealing with rare diseases.

Sentiment

The sentiment surrounding SCR110 is largely positive, as it is viewed as a compassionate gesture aimed at improving awareness and support for those with rare diseases. This resolution reflects a collective acknowledgment of the importance of acknowledging the struggles of individuals like Bailey Caroline Durham, thereby promoting a sense of community and advocacy for better healthcare and resources for people living with disabilities and rare conditions.

Contention

While SCR110 does not present significant contention as it is not a legislative bill that imposes new laws or regulations, it does engage the community’s sentiments around rare diseases. The resolution serves more as a moment of recognition rather than a point of debate, allowing individuals and families affected by rare diseases to feel seen and valued. It highlights the importance of recognizing unique challenges in the healthcare system without delving into elements that might generate political or social conflict.