Groundbreaking ALS Voice of the Patient Report Submitted to FDA

The ALS Association submitted a report to the FDA documenting the real impact ALS has on people living with the disease and their caregivers in order to inform the development of treatments. The information in the report draws from a survey of people living with ALS.   

The ALS Voice of the Patient Report is a groundbreaking document that gives the FDA and other key stakeholders, including drug developers, health care providers, and insurance companies, data from people with ALS and caregivers about the  everyday impact and burden the disease has on peoples’ daily lives, their experiences with currently available treatments, and their hopes for future ALS therapies. This information is also intended to help provide context of the disease burden to the FDA to inform the Agency’s review of new drug applications. This report speaks loudly and clearly to the immense unmet medical need we all are working to confront.

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The Iron Woman Behind the Iron Horse

The Greater New York Chapter of The ALS Association has commemorated a pivotal caregiver from ALS history with a luncheon named in honor of Eleanor Gehrig, the wife of famed baseball hero Lou Gehrig.

November is National Family Caregivers Month, and throughout the month The ALS Association is sharing stories of caregivers from our community. 

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Show Appreciation to a Caregiver During National Family Caregivers Month

November is National Family Caregivers Month. Join The ALS Association in honoring caregivers throughout the month. 

“Being a caregiver of someone with ALS is incredibly challenging, and my role hasn’t even begun to be that physical yet,” said Jen LeVasseur. Her husband, Noel, was diagnosed with ALS in 2017, just over a year after they were married. 

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11 Ways to Maintain Nutrition in People with ALS

National Malnutrition Awareness Week kicks off today. The ALS Association has resources available to help make sure people living with ALS do not struggle with malnutrition as the disease progresses. 

Adequate nutrition can become a critical concern for people living with ALS and their caregivers. Once ALS takes away a person’s ability to swallow safely, placement of a PEG (through the abdomen) feeding tube provides a viable option to maintain adequate nutrition. 

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ALS Association Thanks Community Following FDA Release of Final Guidance Document

On Monday, the Food & Drug Administration (FDA) issued a finalized ALS Drug Development Guidance for Industry. This is one important step in comprehensive efforts to bring therapies to people with ALS more quickly. Five years ago, there was no clarity around what the FDA expected from companies pursuing ALS treatments. The ALS Association recognized this problem, galvanized the broader community, and engaged the FDA to provide a clear roadmap that also can respond to new science as it emerges. The FDA Guidance is one part of a commitment that will not be complete until we have a cure for all people with ALS. 

The ALS Association is in the process of carefully reviewing the final guidance document. We are grateful to people with ALS and their caregivers who have contributed to this process and we thank the FDA for incorporating this input, as well as recognizing the devastating impact of ALS. 

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Results from Our ALS Community Survey

The ALS Association is pleased to share results from our recent community survey. We were interested in hearing about programs and services that people reported as being important, reasons why people were not accessing some programs, major challenges, and issues around medications. Information gained from the survey will be incorporated in to care services planning activities and will be used to inform strategic planning, priority setting, program outcomes, and program improvements. 

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Understanding the Impact of the Ice Bucket Challenge on The ALS Association’s Finances

The ALS Association has always been committed to transparency, including providing complete and accurate financial information on our website. We continue to receive the highest ratings from charity watchdog groups tasked with reviewing our spending, fundraising, and management.

The Ice Bucket Challenge generated $115 million for the national office of The ALS Association in 2014, which spurred a massive increase in the Association’s capacity to invest in promising research, the development of assistive technologies, and increased access to care and services for people with ALS. Since 2014, we have committed more than $131 million toward our mission, including over $89 million committed specifically to worldwide research collaborations.

Since that time, the Association has devoted a page on our website to provide a list of how those funds are being spent. You can always find that information by clicking on the “Ice Bucket Challenge Progress” button on our homepage, or you can view those investments here.

After the Ice Bucket Challenge in 2014, The ALS Association’s Board of Trustees determined that the best use of these proceeds was to immediately put them to work by increasing funding in our core mission areas. As a result, we doubled our operating budget, with most of the increase allocated to research and care service initiatives.

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