Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.
Navy SEAL, Gary "Doc" Welt, discusses ALS and what it's like to have the disease.
Jose Fernandez and the Miami Marlins joined the team this year to #ChallengeALS!
Our signature event, the Walk to Defeat ALS, takes place in 9 markets around the state. Our inaugural Miami-Dade Walk took place this year in Museum Park on September 26th.
We hold an annual Hope and Help Symposium, we had two this year. This is a one-day event for persons with ALS, their Caregivers, and family members, as well as supporters of the ALS community. It's a full day of speakers, breakouts and a vendor fair allowing our constituents the opportunity to meet and hear directly from the doctors, researchers, and experts in their field.
Each year we travel to Washington D.C. in May to meet with members on Capitol Hill to advocate for persons living with ALS and their families. We offer financial assistance to many of our patients so they can travel with us and tell their stories first-hand.
We hold ALS Awareness events around the state. this year we worked with the Miami Marlins and Jose Fernandez to host an ALS Awareness night at Marlins Park. We had a fantastic night with more than 160 in attendance. Jose even took the Ice Bucket Challenge for us on the field before the game!
Charity Navigator awarded The ALS Association Florida Chapter, Inc. four out of a possible four stars. Receiving four out of a possible four stars indicates that the Chapter adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way. Please click on the logo to review our four star rating.
Regional Care Managers, who are health care professionals, provide home visits, phone and email consults, and clinic visits to educate patients and families about ALS. The goal is to improve overall quality of life and survival and enhance informed decision making. We can greatly increase safety and independence, and help to provide access to comprehensive ALS specialized care. We strive to increase social and emotional support, diminish social isolation, and diminish financial and emotional stress. Along with an improved quality of life for families while their loved one is living with ALS, families will experience the support and hopefulness that enables the creation of a growing and ongoing ALS community. Ultimately this enables the ALS community to better address the needs of newly diagnosed patients and families and provide continuing support for the work of the Chapter to fund research and programs for ALS in Florida.
Our strategic plan includes the very important area of research for treatment and a cure for ALS. Our goal is to support and fund research to understand ALS, develop treatments, and ultimately find a cure. We will accomplish this by promoting the National Registry and encouraging all those we can to enroll and tell their story. We will expand communications to spread the word and encourage clinical trials here in Florida. We will continue to promote a better understanding and the value of ALS research and The ALS Association programs, especially those happening right here in the state of Florida. For example, with our new Hope and Help Webinar series, we are able to communicate to our patients and families directly through the internet where they can hear firsthand from the doctors and researchers here in the state, giving them even more hope for their futures.
We will advance state and Federal advocacy programs that empower the entire ALS community to increase funding for research and improve services to ALS patients and families. We will continue to investigate and cultivate sources of state government funding. We will advance national public policy priorities and initiatives by participating in the National ALS Advocacy Day and Public Policy Conference in Washington DC each May. We will create a process to engage chapter advocates around specific initiatives we want to pursue with new communication strategies utilizing social media.
We will continue to raise the level of awareness of ALS and The ALS Association Florida Chapter. As the leading voice and most trusted source of information about Lou Gehrig's Disease in the state of Florida, we will develop and implement an annual Awareness and Communication Plan including more strategic marketing around all of our events and programs. This will include increased engagement with our constituents through several social media platforms including Facebook, Twitter, Instagram and others. We will utilize emails and newsletters as well as recorded PSAs to be placed throughout the year. We will leverage National ALS Awareness campaigns including the launch of strengthened branding, Challenge ALS. We will work to measure the effectiveness of our awareness efforts through traditional means as well as surveying stakeholders.
President and CEO
This organization's financial statements were independently submitted and have not been verified by The Miami Foundation.