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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ALS Care Connection Helps Organize Community of Help for Families Impacted by ALS

The impact of an ALS diagnosis is profound – and not just for the person living with the disease.

Daily activities, like making meals, doing laundry, mowing the lawn, and walking the dog, take a back seat when providing care for a family member with ALS.

Caregivers can feel defeated by the growing list of tasks they are no longer able to manage. Yet, it can be hard to know when and how to ask family members, friends, and neighbors for help.

In the same vein, it can be difficult for those who want to lend a helping hand to know just what is needed and how to make a difference.

Our ALS Care Connection program was created to help. The program has expanded to include a new mobile app that can be downloaded to your smartphone or tablet. So, it’s very easy for people to organize a care community for their own family or for loved ones impacted by ALS.

Through ALS Care Connection (powered by Lotsa Helping Hands), families can set up a private online calendar that can be used to organize volunteers who want to take on some of the tasks that have become less manageable.

Now, when someone asks what they can do to help, the answer is, “Let me give you access to our ALS Care Connection calendar.”

To learn more about accessing ALS Care Connection and creating a private community for your family, click here.

The ALS Care Connection mobile app can be found in both the Apple App Store and the Google Play Store by searching for “Lotsa Helping Hands.” Once your family’s private community has been set up, The ALS Association logo will appear at the top.

New Jane Calmes ALS Scholarship Fund Helps Students Financially Impacted by ALS Pursue Higher Education

The ALS Association is pleased to announce a new scholarship program that will fund up to $5,000 per year for at least 30 students whose personal or family finances are compromised by the financial burden of ALS.

The Jane Calmes ALS Scholarship Fund was established by Mark Calmes, vice chair of The ALS Association’s National Board of Trustees. The scholarship fund is named in honor of his late wife, Jane, who fought ALS for eight years and passed away in August 2017.

“Jane amazed me every day,” Mark says. “She was a fighter who battled three illnesses in a row – a silent heart attack, breast cancer, and then ALS. After she died, I began to think of ways to honor her courageous spirit and compassion. The idea of a scholarship program resonated with me because Jane was always keen on the lifelong benefits provided by education.”

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Handling Hospital Visits When You Have ALS

Editor’s note: This article was republished with permission from The ALS Association St. Louis Regional Chapter.

Even though ALS is a disease that has its own health implications, people with ALS are not immune from other injuries or medical issues. Individuals with ALS can still get sick or hurt themselves in ways unrelated to the disease.

Or, people with ALS might have complications directly related to the disease that warrants a visit to the hospital.

When an individual with ALS goes to the hospital or the emergency room, they face additional obstacles with hospital staff who may not fully understand how ALS affects a person’s breathing, speech and movement. Extra measures should be taken to ensure people with ALS are cared for in the right way.

Here are some tips on what to look out for and how to prevent misunderstanding in the hospital or emergency room.

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New Education Guides Help to Lessen Fear, Uncertainty for Youngest Affected by ALS

ALS can be confusing, scary, embarrassing, and overwhelming – for people living with the disease as well as for the youth within their families. Young people need age-appropriate details about ALS to help reduce some of the fear and uncertainty surrounding the disease.

That’s why we created our new youth education guides.

Many young people fear the unknown and may feel responsible for helping their loved one. Children often feel helpless and don’t understand what is happening to their loved one with ALS.

Children and teens who provide direct caregiving to their loved one with ALS, and emotional support to adults and siblings within the family, can struggle with feelings of isolation and depression and even a decreased self-worth.

Preteens and teenagers may have difficulty explaining ALS to their friends and often don’t know how they can help their loved one living with the disease.

And adults and other family members often grapple with how they can explain the disease openly and honestly.

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A Look Back: Our Largest-Ever Clinical Conference Re-Confirms We’re ‘All in This Together’

Every two years, hundreds of ALS health care professionals come together to discuss new trends, share best practices and guidelines, exchange ideas and successes, and talk about challenges and potential solutions. To capture the collaborative power of the 2018 event in Fort Worth, Texas – our largest-ever Clinical Conference, with more than 500 attendees – we put together a short video highlight reel.

“One of the beautiful things, I think, about the Clinical Conference is that everybody’s really all in this together and we’re all trying to do everything we can for the patients and their families,” Dr. Melinda Kavanaugh, MSW, LCSW with the Helen Bader School of Social Welfare at the University of Wisconsin-Milwaukee in Milwaukee, Wisconsin, said.

Attendees of the three-day conference include physicians, speech-language pathologists, assistive technology professionals, physical therapists, occupational therapists, registered dietitians, respiratory therapists, nursing professionals, and social workers.

“The [Clinical Conference] is […] an exceptional opportunity for folks who are across disciplines, for people who are really hands-on, deeply engaged with patients and caregivers in the community [to] really learn from each other in a very non-intense or non-threatening environment,” Dr. Kavanaugh added. “Sometimes research symposiums can be pretty overwhelming.”

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