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FOR IMMEDIATE RELEASE:

February 12, 2020

 

THE ALS ASSOCIATION RECOGNIZES TWO JACKSONVILLE CLINICS

AS CERTIFIED TREATMENT CENTERS OF EXCELLENCE

 

JACKSONVILLE, Fla. -- The ALS Association recently recertified two multidisciplinary clinics in Jacksonville as Certified Treatment Centers of Excellence for those affected by ALS. The Mayo Clinic and UF Health Jacksonville each received a $25,000 grant from The ALS Association to help support the care they provide to ALS patients.

 

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is an invariable fatal neurodegenerative disorder affecting motor neurons.

 

Multidisciplinary ALS Clinics have emerged as the gold standard for treating and supporting patients with ALS and their families. At a Multidisciplinary ALS Clinic, patients receive comprehensive care from a team of specialists at a single location, on a single day. The team includes a neurologist, specialized nurse case manager, pulmonologist (available as needed), gastroenterologist (available as needed), respiratory therapist, physical therapist, occupational therapist, speech therapist, dietitian, social worker, psychologist, palliative care expert and an ALS Association Chapter-Clinic Liaison. Multidisciplinary ALS Clinics coordinate care and interface with the primary care physician, local neurologist, and community-based services.

 

“The ALS Association’s Florida Chapter is proud to work closely with the clinical teams at Mayo Clinic and UF Health Jacksonville,” said Ray Carson, president and CEO of The ALS Association Florida Chapter. “Even though ALS is currently incurable, studies have clearly demonstrated that patients who attend a Multidisciplinary ALS Clinic have 40 percent longer survival rates while also benefiting from an improved quality of life.”

 

About The ALS Association Florida Chapter

Since 1987, The ALS Association Florida Chapter has been “covering all the bases for people living with ALS in Florida."  We provide patient programs, advocate on behalf of patients with our government leaders, create awareness of the disease, and fund research.  In addition, the organization provides financial support to our statewide multidisciplinary ALS clinics and research facilities, enabling them to increase patient care. For more information, visit us on our website at www.alsafl.org or on Facebook, Twitter or Instagram @ALSFlorida. 

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 Mayo Clinic Recertification 2020

Mayo Clinic Jacksonville (pictured from left to right)
Alecia Jones Bailey, The ALS Association Florida Chapter Board Member and Founder of The ALS Association’s St. Augustine Walk to Defeat ALS®
Dr. Bjorn E. Oskarsson, Mayo Clinic
Hampton Graham, The ALS Association Florida Chapter Board Vice Chairman

 

 UF Health Recertification 2020

UF Health Jacksonville (pictured from left to right)
June Solomons, UF Health Jacksonville
Dr. Michael T. Pulley, UF Health Jacksonville
Hampton Graham, The ALS Association Florida Chapter Board Vice Chairman
Ray Carson, CEO of The ALS Association Florida Chapter


 

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 Bio 2019Ray 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:  Stephanie Oliva, The ALS Association Florida Chapter

 

soliva@alsafl.org - 813.637.9000 x120

 

 

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.

 

4 star employees

 

Pictured Above from Left: Darcy Klempner, Kate Sanstrom, Heran Sisay, Sam Luke

 

Charity Navigator LogoAbout 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: Stephanie Oliva, The ALS Association Florida Chapter

 

soliva@alsafl.org | 813.637.9000 x120

 

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:

 

ALS IBC Funds Infographic

 

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