FOR IMMEDIATE RELEASE:
April 4, 2019
Ray Carson Appointed New President and CEO of
The ALS Association Florida Chapter
TAMPA, Fla. – Ray Carson has been named president and CEO of The ALS Association Florida Chapter, a nonprofit organization dedicated to the fight against ALS. ALS, also known as Lou Gehrig’s Disease, progressively paralyzes its victims, attacking nerve cells and pathways in the brain or spinal cord, taking away their ability to walk, talk, eat and eventually breathe. ALS has no known cause or cure, but The ALS Association is striving to change that.
Ray Carson most recently served as Director of Media Advocacy for the American Cancer Society Cancer Action Network (ACS CAN). In that role, he served as lead communications counsel in 24 states, the District of Columbia and Puerto Rico, leading a team of four media advocacy professionals promoting the organization’s local, state, and federal priorities in the region.
Carson joined ACS CAN after a 14-year career with the American Cancer Society where he served in a variety of executive leadership positions in the Florida Division, including Chief Operating Officer, Senior Vice President for Support Services and Vice President of Communications and Marketing. Carson also served two years as Regional Director of Human Resources covering 14 states, the District of Columbia, and Puerto Rico.
“We are very excited to bring Ray onboard at the Florida Chapter,” said John Cannistra, chairman of the board. “Ray’s vast experience with the American Cancer Society gives him the knowledge and confidence to lead this team, to make a positive impact on the ALS community, and ultimately to advance the work to find a treatment and cure."
MEDIA CONTACT: Julie Niehoff, The ALS Association Florida Chapter
firstname.lastname@example.org - 813.310.2097
About The ALS Association Florida Chapter:
The ALS Association Florida Chapter offers care and support to people living with ALS in Florida and funds research to find the cause and cure for ALS. We are part of a nationwide network of local ALS Association chapters with the same vision – a world without ALS. Through care, advocacy, research, education and support, we work to empower those with ALS to live fuller lives. Every year, The ALS Association invests millions of dollars in research conducted by the best and brightest scientists around the world. As the only national not-for-profit health organization dedicated solely to the fight against ALS, we give help and hope to those facing a devastating disease. For more information, visit www.ALSAFL.org.
FOR IMMEDIATE RELEASE:
Charity Navigator Awards The ALS Association Florida Chapter
Four-Star Rating Four Consecuative Years
On February 1, 2018, Charity Navigator, America’s largest and most-utilized independent evaluator of charities, awarded The ALS Association Florida Chapter their prestigious 4-star rating for the fourth consecutive year for good governance, sound fiscal management, and commitment to accountability and transparency.
Charity Navigator works to help charitable givers make intelligent giving decisions by providing information on more than five thousand charities nationwide and by evaluating their financial health. It calculates each charity’s score based upon several broad criteria, including how much is spent per dollar raised, what percentage of funds goes to programs vs. administrative and fund-raising expenses, and the organization’s long-term financial health. It then assigns a rating from one to four, with four being the best rating.
Since 2002, using objective analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating. “Only 12% of the charities we evaluate have received at least four consecutive 4-star evaluations, indicating that The ALS Association Florida Chapter outperforms most other charities in America,” according to Michael Thatcher, President & CEO of Charity Navigator. “This exceptional designation from Charity Navigator sets the Florida Chapter apart from its peers and demonstrates to the public its trustworthiness.”
“It’s important our donors trust that we’re using their donations wisely to accomplish our mission: To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest,” said Sandi Torres, Chairman of the Board for the Florida Chapter. “Our 4-star rating demonstrates to our supporters our good governance and financial accountability to those we serve.”
More detailed information about The ALS Association Florida Chapter’s fourth consecutive 4-star rating is available on the Charity Navigator website here: CharityNavigator.org.
Pictured Above from Left: Darcy Klempner, Kate Sanstrom, Heran Sisay, Sam Luke
About Charity Navigator:Charity Navigator, www.charitynavigator.org, is the largest charity evaluator in America and its website attracts more visitors than all other charity rating groups combined. The organization helps guide intelligent giving by evaluating the Financial Health and Accountability & Transparency of more than 8,000 charities. Charity Navigator accepts no advertising or donations from the organizations it evaluates, ensuring unbiased evaluations, nor does it charge the public for this trusted data.
BREAKING ALS NEWS! The FDA has approved the first
new drug for ALS in 22 years!
FOR IMMEDIATE RELEASE:
The ALS Association Applauds FDA for Speedy Approval of New ALS Drug
Radicava is First Approved Treatment for ALS in Decades
FLORIDA, May 8, 2017 – The ALS Association, the only national nonprofit fighting amyotrophic lateral sclerosis (ALS) on every front, applauded the Food and Drug Administration’s (FDA) announcement Friday that it has approved Radicava (edaravone), the first new treatment approved specifically for ALS in 22 years. The FDA approved Radicava less than a year after Mitsubishi Tanabe Pharma Corporation submitted a New Drug Application. The only other approved treatment specifically for ALS, riluzole, was approved in 1995.
“It is unprecedented that the FDA has approved a treatment without clinical trials conducted in the U.S., this saved years in the approval process,” said Kim Hanna, President and CEO of The ALS Association Florida Chapter. “We are so thankful to all those involved who made this possible. This announcement is hopefully just the beginning of viable treatments for people fighting this terrible disease.”
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population.
Edaravone was originally approved in Japan to treat stroke and in 2015, it was approved for use as a treatment for ALS in Japan and South Korea. In the United States, it will be commercialized under the brand name radicava. According to MT Pharma, the drug has been demonstrated to slow decline of physical function in ALS patients by 33 percent.
More information about Radicava, including Frequently Asked Questions, can be found HERE.
About The ALS Association Florida Chapter - The ALS Association Florida Chapter offers care to ALS patients living in Florida and funds research to find the cause and cure for ALS. We are part of a nationwide network of local ALS Association chapters with the same vision – a world without ALS. Through care, advocacy, research, education and support, we work to empower those with ALS to live fuller lives. Every year, The ALS Association invests millions of dollars in research conducted by the best and brightest scientists in the world. As the only national not-for-profit health organization dedicated solely to the fight against ALS, we give help and hope to those facing a devastating disease.
About MT Pharma America, Inc. - Based in Jersey City, NJ, MT Pharma America is a wholly-owned subsidiary of MTPC’s 100% owned U.S. holding company, Mitsubishi Tanabe Pharma Holdings America, Inc. MT Pharma America is dedicated to delivering innovative solutions that address the unmet medical needs of patients in the United States. It was established by MTPC to commercialize approved pharmaceutical products in the U.S. with plans to expand its product line through collaborations with partners.
MEDIA CONTACT: Julie Niehoff, The ALS Association Florida Chapter
email@example.com | 813.310.2097
To DOWNLOAD a Copy of this release, CLICK HERE.
View the latest editions of ALS Access, the Florida Chapter's Newsmagazine:
Beyond The Bucket: Where Are We Now?
It's beenover 2 years since the #ALSIceBucketChallenge and we are forever grateful for each and every person who joined our cause and for the loyal supporters who have been with us for years. Because of you, our ALS community has renewed determination and hope in leading the fight against this disease.
People all over the world donated more than $220 million to ALS charities, with an incredible $115 million contributed to The ALS Association during the Ice Bucket Challenge. So, how is this money making difference?
Check out this infographic that shows how your support accelerates the discovery of effective treatments for ALS:
But our work is not over.
It can cost $2 billion and take 15 years to develop one new drug. That’s why we are relying on you to help keep the momentum – and progress – pushing forward. Together, we CAN make a difference in the quest to treat and cure ALS. #EveryAugustUntilACure
State Renews Funding For Florida's ALS Clinics
(Originally posted Spring, 2014)
The Florida Legislature has renewed funding for the Bitner/Plante Amyotrophic Lateral Sclerosis Initiative of Florida, once again providing $1 million to ALS clinics around the state that provide patients with comprehensive ALS Care. The Bitner-Plante ALS Clinic Initiative is funded by The ALS Association Florida Chapter and The State of Florida Department of Health.
“The Legislature stepped up to the plate and recognized the importance of access and the challenges faced by ALS patients,” said Clifton Gooch, MD, professor and chair of the USF Health Department of Neurology and an ALS specialist. “By continuing to fund these multidisciplinary centers, they made a path for patients and their families to get much needed coordinated care.”
The original funding in last year’s legislative session expanded the services of Florida clinics offering the highest level of comprehensive multidisciplinary ALS Care and included USF, University of Miami, University of Florida Shands in Jacksonville, and the Mayo Clinic Jacksonville. Last year’s funding allowed the USF clinic to double the number of patients seen by the USF ALS team and this year’s funding will enable that level of service to continue, Dr. Gooch said.
The original Bitner-Plante ALS Florida Initiative came about through the efforts of Wendy Bitner (widow of the late Florida GOP Chairman David Bitner, who died of ALS in September 2011), The ALS Association Florida Chapter, and USF Health’s lobbyist Pamela Pfeifer, USF Health associate vice president of Government Relations.
“Pam Pfeifer with USF health worked diligently during the legislative session to help insure that the million in the Bitner/Plante ALS initiative remain funded at its current level,” said Bitner, who is a member of The ALS Association Florida Chapter’s board of directors.
Providing such comprehensive clinics is imperative for ALS patients, said Kim Hanna, president of the ALS Association Florida Chapter.
“Evidence shows that multidisciplinary clinic care can extend the life of an ALS patient,” Hanna said. “Continuation of the Bitner/Plante ALS initiative funding is critical for people living with Lou Gehrig’s disease in Florida.”
Dr. Gooch agrees. “ALS multidisciplinary clinics have been proven to extend patient survival by 30 percent or more, sometimes adding years of life,” Dr. Gooch said. “It’s also important not to underestimate the value of these face-to-face visits for patients and their families. The impact of the human touch is vital in treating ALS and the clinic itself also becomes a de facto support group, providing a real community and support for both patient and caregiver.” Florida Department of Health
"Incidentally," Hanna noted, "Florida is the only state to fund ALS Clinics."
ALS Certified Centers of Excellence and Recognized Treatment Centers are sponsored by The ALS Association Florida Chapter and the State of Florida, Deparment of Health.