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“Evidence shows that multidisciplinary clinic care provides better quality of life and extends the life expectancy of a person living with ALS. Continuation of the Bitner/Plante ALS Initiative funding is critical for people living with Lou Gehrig’s disease in Florida.”
- Patti Stanco, Director of Advocacy, The ALS Association Florida Chapter
Become an ALS Advocate
An ALS Association Florida Chapter Advocate is a foot soldier in the battle to defeat ALS. Someone who is passionate about getting involved with government at all levels to draw essential resources and awareness to the people affected by this disease. An Advocate is someone who is willing to step outside of their comfort zone to effect real change in the way our state government responds to the critical needs of the ALS community.
Even if you aren't a friend, relative, supporter, or business associate of a legislator, you can open doors through your outreach. As an Advocate, you can help change the laws and policies that affect thousands of people with ALS and their families. And with more than 1,600 people living with ALS in the state of Florida alone, the need is great!
Together, we can make a difference!
Five minutes. That's all it will take to learn about the issues affecting the ALS community and to reach out to your Florida Representative and take action in support of the brave people living with this disease. The actions of our elected officials have a tremendous impact on people with ALS, so it's important that those leaders hear our message. We need your help - in just 300 seconds, you can make a difference!
Our Florida legislators need to hear from the ALS Community on this very important funding issue:
The Bitner Plante ALS Clinics Initiative of Florida
This Initiative was created in 2013 to increase access to ALS multidisciplinary care among ALS patients and to serve the many patients who are waiting or whose care is denied or delayed because of Clinic budget restraints or restricted access to Clinic care, especially in the Panhandle and other rural areas. The costs of running an ALS multidisciplinary Clinic are over and above reimbursements received from Medicare and insurance. Funding will be used to address those costs (the “gap”) and to increase capacity by making services available in the most efficient way. Funding for this initiative has decreased from $1M in 2013 to just $250,000 in 2018.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is an always-fatal neurodegenerative disorder affecting motor neurons, characterized by paralysis and death typically within two to five years from the time of diagnosis. Victims gradually lose the ability to walk, talk, eat, and eventually breathe.
About ALS in Florida
It's estimated that there are more than 1,600 people living with ALS in the state of Florida. Because of the fatal nature of the disease (every 90 minutes someone is diagnosed with ALS and every 90 minutes someone dies from ALS), the number of people who are being treated for ALS in Florida during a given year is actually greater because patients pass away during the year and their names are replaced by others who become newly-diagnosed.
Below is a link to myfloridahouse.gov to find your state representatives. Locate your state representative, send them an email, call their office, or set up an appointment for a visit! Share your thoughts about the many the issues affecting the ALS community in Florida and ask them for their help!
For a message to cut and paste directly into an email to your representative, CLICK HERE.
If you would like to make a donation today to help provide care and support for people living with ALS in Florida, please CLICK HERE.