Fundraising for ALS: Tips to make a real impact
ALS (Amyotrophic Lateral Sclerosis) is a progressive neurodegenerative disease that changes the lives of those suffering with it, and their loved ones, forever. Also known as Lou Gehrig’s disease, this rare and fatal condition affects people’s nerve cells in the spinal cord and brain over time with heartbreaking consequences. It stops people’s ability to walk, speak, and even breathe.
There are no known causes of ALS, which affects around 5,000 people in the US each year. But there are charities and organizations that are dedicated to finding a cure by funding groundbreaking research.
Here you’ll find a guide to the best fundraising ideas to help support ALS charities and raise awareness of this devastating disease, and why this kind of collective action is a vital tool in the fight against it.
What is ALS? Lou Gehrig’s disease facts
ALS is a progressive degenerative disease that currently has no cure and no known cause. Symptoms can start with small issues like muscle twitching, tripping up, and dropping things, and it usually affects people aged between 40 and 70, though younger people can be diagnosed with it. ALS affects slightly more men than women, and around 90% of people who develop it have no family history or genetic link to the disease, though there are a small number of people who develop an inherited form of ALS.
It is also known as Lou Gehrig’s disease after the famous New York Yankees baseball player, who had the nickname the “Iron Horse” for his endurance on the pitch. His ALS diagnosis in 1939 ended his 17 season run with the Yankees, but the vast publicity around it meant he created ALS awareness among millions of people.
Understanding motor neurone disease
ALS is a type of motor neurone disease (MND) that affects the nerve cells in the body, causing the muscles to become weak and eventually paralyzed. This is caused by the nerve cells in the brain and spinal cord degenerating over time until they eventually die. When this happens, the brain loses control of the muscle movement and motor functions in the body, which is what affects people’s ability to grip with their hands or speak clearly, and eventually their ability to walk, swallow and even to breathe.
ALS is one of four main types of motor neurone disease and the most common. PBP (Progressive Bulbar Palsy) usually affects the muscles in the face, throat and tongue, which prevents speaking and swallowing. PMA (Progressive Muscular Atrophy) causes weakness in the hands, stopping people from being able to hold or grip objects. PLS (Primary Lateral Sclerosis) causes weak leg muscles and issues with walking, and sometimes affects functions such as speech.
What are ALS symptoms?
ALS affects muscles in both the upper and lower part of the body, and early symptoms usually start with noticing muscle weakness or twitches. This may begin in one limb over a period of weeks or months, and then progress to another limb, or it could begin with muscles in the mouth causing slurred speech.
The most common symptoms include: twitching or cramping muscles, tripping and falling, dropping things, lasting fatigue, trouble using arms and legs, slurred speech, and uncontrollable periods of laughing or crying, according to Johns Hopkins Medical.
Advanced symptoms include: trouble breathing, trouble swallowing, and paralysis.
ALS usually has a gradual onset and the symptoms that show up first can vary greatly, starting with tripping up or dropping things, or even with a person’s voice changing pitch, the ALS Association states. It is a progressive disease, with an average survival time of three years, but how fast this progression takes place also varies from person to person. The ALS Association states that around 20% of people diagnosed with ALS live with the disease for five years, 10% for 10 years, and 5% for 20 years or more.
How ALS affects people and their loved ones
An ALS diagnosis is devastating and instantly changes the life of the person battling it and the lives of the loved ones who care for them. It does not just change people’s lives physically by stopping them from being able to dress or feed themselves, it is also an emotionally overwhelming condition that causes feelings of sadness, anxiety, and fear while learning to accept and manage the symptoms and major life adaptations it requires. It is also common for people with ALS and their carers to suffer with clinical depression.
An ALS diagnosis can also significantly change a family’s finances. Out of pocket costs for ALS treatment and care can range from $80,000 to $250,000 a year, which includes health insurance deductibles, co-payments, and medication, ALS Association vice president of state policy, Kara Nett Hinkley says. But any modifications that are made to someone’s home to accommodate changes in mobility, in-home care, or loss of work for patients and caregivers, adds to the significant financial toll.
Many people affected by ALS have turned to fundraising to help cover their healthcare or care costs:
- Dave Cooney and his family, from Kansas, have been dealing with his devastating genetic ALS diagnosis since October 2024. Dave is no longer walking but is grateful to still be speaking and using his phone, and is fundraising so that he and his wife can afford to make significant modifications to their home such as installing bed hoists, shower modifications and widening doors while still putting their children through college.
- Glenn Love, from Arizona, is a former professional footballer and stunt man who was diagnosed with ALS in July 2024, the day after his daughter’s first birthday, at the age of 35. He is determined to try a range of new medical treatments to try to extend his life to see his daughter grow up, and a portion of all money he raises goes to the ALS Association.
- Margaret Toal from New York started a fundraiser to help support her mother, who has ALS, and give her independence in her own home by being able to install an elevator. She ran the Brooklyn Half Marathon in honour of her mother and to raise awareness of Compassionate Care ALS, a nonprofit organization that helps improve the quality of life of those diagnosed with ALS and their families.
Why is ALS fundraising important?
ALS fundraising creates vital awareness of the disease, generates money to fund groundbreaking research in the search for new life-lengthening drugs, prevention strategies and a cure, and helps to support the people and communities affected by it. The short life expectancy of people diagnosed with the disease and the rapid progression of symptoms means there is an urgent need for ALS research funding to help develop effective treatments now.
ALS diagnosis has been found to be higher among veterans, though the cause of this is unknown. Government funding for ALS research programmes remains low, however. In 2023, the funding allocated to ALS clinical research by the Department of Defence was just $40m, the ALS Association states.The National Institutes of Health (NIN) gave $131m in funding to further understand the ALS, and the Centre for Disease Control (CDC) had just $10m in funding for a prevention and research programme.
How does ALS fundraising work?
There are a number of ways that ALS charities and advocacy groups raise money, from individual donations and fundraisers to organized fundraising events, and corporate sponsorships and partnerships. The money raised by organizations like the ALS Therapy Development Institute, the ALS Network and the ALS Association goes into cutting edge ALS research funding and clinical trials designed to find new drugs to help slow the progression of the disease, understand its cause and eventually develop a cure.
Money raised also goes into patient support funds and financial assistance programmes to help families grapple with healthcare and living costs, and into advocacy work that helps raise awareness of the challenges of ALS among local communities and at a national level among lawmakers and policy makers.
Who benefits from ALS donations?
ALS patients and their caregivers benefit from donations first and foremost, whether it’s through a dedicated charity or through a fundraiser set up by families to support their loved ones. ALS organizations benefit from donations by being able to continue their vital work supporting patients, and by funding official research facilities they are partnered with.
ALS Ice Bucket Challenge origin
The history of ALS fundraising doesn’t start with the ALS Ice Bucket Challenge, but the viral fundraising campaign is what truly put the fight against ALS on the map. It started in the summer of 2014 when Anthony Senerchia, Pete Frates and Pat Quinn, three men living on the East Coast who were all battling ALS, spearheaded what would turn into a global movement by getting people to throw buckets of ice water over their heads to raise awareness and money for ALS.
Anthony’s wife Jeanette was challenged to dump a bucket of water over her head by her cousin, which she did while being filmed, and said: “This is to generate awareness about ALS”. She then posted the video online and challenged three girlfriends to do the same. From there, Pete and Pat became connected with Anthony by their friends and family seeing the videos shared in their networks and joining in. Everyone was determined to help spread awareness of ALS and raise enough money to help end it for good.
Within just a few weeks the ALS Ice Bucket Challenge had spread like wildfire through the power of social media. It gained local, national and then global news coverage, with celebrities and public figures like Taylor Swift, Justin Bieber, Oprah, Bill Gates and former President George W Bush joining in. Jimmy Fallon and The Roots even did the challenge on his late night show, raising awareness about ALS and the ALS Association among his millions of viewers.
Impact on ALS Association fundraising
A total of 17 million ALS Ice Bucket Challenge films were made in 159 different countries. The viral ALS Association fundraiser generated $115 million for the nonprofit to support its mission, part of $220 million total raised worldwide. The ALS Association was able to fund a number of research projects with the money raised and saw its first breakthrough within just two years. Researchers as part of Project MinE identified a new gene associated with ALS that has furthered scientists’ understanding of the disease.
And the research projects funded by this money continue to have an impact on patients years later. In 2022 the FDA approved an ALS treatment drug that was developed with money raised through the ALS Ice Bucket Challenge. Read more about ALS fundraising events here.
What is the best way to fundraise for ALS?
If you or a loved one have been diagnosed with ALS, you can start your own fundraiser to raise money to support yours or your family’s changing needs. You can start one even if you are not directly affected by the disease but you want to help raise money for a nonprofit that can be put into ALS research and patient support. If you don’t want to run your own fundraiser, you can always help out by volunteering at a charity event.
How can I start an ALS fundraiser?
Decide on the type of ALS fundraiser you want to start, such as a sponsored run or marathon, an online auction, or an event like a movie night or trivia night. Choose which crowdfunding platform you want to use and set up your donation page, explaining clearly who you are and why you are fundraising for ALS. Be transparent about how you will spend the money you raise, whether it is for your own ALS support, to help someone you love with ALS, or to support a nonprofit in its endeavours to keep funding new ALS research.
Be sure to share your donation page with your friends and family, and across your social media networks like Facebook, Instagram and TikTok. If you can, add a video to your social posts explaining why you’re fundraising for ALS, and ask your friends to share your fundraising page with their networks, too.
9 ALS fundraising ideas for 2025
- Bingo night: See if a local bar or restaurant will let you host a bingo tournament for free. Buy or make the bingo cards yourself to save money, and see if any local businesses could donate prizes for the winners. Get people to donate to take part, and see if the bar or restaurant would consider donating a portion of their takings for the night. You could set up a trivia night as a follow up event.
- Car wash: Reach out to your local community for volunteers, find a parking lot you can use, and get in some buckets, soap and sponges. Get in touch with your local community to see who can volunteer to help out, find a parking lot you can use, and get drivers to donate to have their dusty cars cleaned.
- Fun run: Take part in a fun run and get people to sponsor you or donate for every milestone you hit while dressed in a silly costume. It doesn’t matter if it’s a 5K, 10K or a marathon. You could also organize your own fun run for your local community to join in with, and have people donate to take part.
- Art sale: Contact local artists and see if they will donate one small item to a charity art sale. There may be a local gallery that would be willing to host a small exhibition and art sale, otherwise you can sell them online to raise money for ALS.
- Games night: Ask a local cafe or community centre if you could host a game night to raise money for ALS. Get friends, family and local community members to bring their favourite board games to play and make a donation to take part. See if local businesses can donate gifts to the winners.
- Virtual walking challenge: Choose the distance you want to walk, decide when you’re going to get your miles in, and get tracking. With a virtual walk you can get your steps in at any time that suits you until you’ve reached your distance goal. Get people to sponsor every mile you walk, donate for every milestone you reach, or donate when you’ve completed your challenge.
- Bake sale: Does your child have football game coming up or a sports day where you can set out your bake sale stall? Are there any community events you can get involved with and sell delicious baked goods? Bake sales are fun and easy ways to raise money for ALS. Simply bake enough cupcakes and cookies to sell and give all the proceeds to charity. If baking isn’t for you, think about running a yard sale, instead.
- Stream for charity: Are you a gamer or a streamer? Set up a live stream doing what you love and talk to your audience about ALS while playing the latest game. Get people watching you to donate what they can and give all the proceeds to charity.
- TikTok challenge: Pick a challenge to do on TikTok like learning a new dance, share the video with your friends, and get them to do the same. You could even start doing the ALS ice bucket challenge again.
Can I volunteer for ALS events?
Choose the ALS charity or organization you want to volunteer for and sign up to the next event you can help out with. Whether it’s an event hosted in a local community, a charity sports event or a formal fundraiser, nonprofits will need help with everything from setting up to cleaning up events after they’ve finished, chaperoning charity running routes, or simply helping with some data entry. No matter what you end up helping with, volunteers are vital to ALS nonprofits, so find the sign up form on your ALS charity of choice’s website and fill it out.
Where to donate and get involved
If you want to know how and where to give money for ALS research or organizations, there are a number of trusted groups that are constantly funding new projects and clinical trials, and which help support people suffering with ALS.
What are the best ALS charities?
There are so many ALS charities and nonprofits dedicated to beating the disease and many may be local to you. Here are some of the biggest and best known to access as a first port of call:
ALS Association is the world’s leading nonprofit dedicated to finding a cure for ALS and supporting those battling it. It has dedicated support in all 50 states, funds multiple research projects and advocates for better policies and more funding for research.
Team Gleason was founded by former NFL special teams player Steve Gleason after his ALS diagnosis in 2011. It is dedicated to empowering people with ALS live purposeful lives and has so far raised $55 million in adventure, technology, equipment and care services for people with ALS.
Project ALS is dedicated to identifying and funding promising research that will lead to the first effective treatments and cure for ALS, and works directly with doctors and scientists to do so.
MDA ALS Care Centres are run by the Muscular Dystrophy Association and offer thousands of appointments every year for people with ALS to access care, clinical clinical trials, and to connect with others in the community.
How do I donate to ALS?
You can donate to any ALS organization of your choosing either with a one-off donation or through a monthly recurring donation. Charitable donations to qualified organizations are tax deductible if you itemize them on your tax return and fill out the relevant forms, so check which charity you want to donate to will qualify if you want to do this. You can also double your donation through corporate gift matching programs. Ask your employer if it runs a corporate matching scheme and fill out the relevant form to instantly increase your donation.
Supporting ALS Through Online Fundraising
You can join a fundraiser for ALS by taking part in an established volunteer program or fundraiser set up by an ALS charity or nonprofit organization. If you want to run your own fundraising event or solo fundraiser you can set up your own fundraiser by using GoFundMe or another crowdfunding platform.
Be sure to be clear and transparent in your fundraising description about why you are fundraising for ALS, if you’re crowdfunding to help a specific person or organization, and how the money raised will be used. Send updates to your supporters as your fundraiser progresses and don’t forget to thank donors when you reach your fundraising goal or any milestones along the way.
Famous Faces of ALS: Stories That Inspire
Despite the heartbreak ALS causes, there are still inspiring stories of people fighting the disease against the odds and providing a beacon of light to everyone suffering with its detrimental effects. Here are three ALS impact stories from famous patients that still provide inspiration today.
Lou Gehrig was an MLB Hall of Fame player before his ALS diagnosis. He played 2,130 consecutive games, a record that wasn’t broken until 1995, which helped him gain the “Iron Horse” nickname. It was also because of his endurance and ability to play despite a number of illnesses and injuries. He was diagnosed with ALS on his 36th birthday in 1939, and two weeks later gave his famous speech at Yankee Stadium, in which he called himself the “luckiest man on the face of the Earth” before stepping down from the team and the sport. He ended the speech by saying: “I might have been given a bad break, but I’ve got an awful lot to live for.” He is remembered each year on Lou Gehrig’s day, June 2, to both honour his legacy and raise awareness of ALS.
Stephen Hawking was most famous for being a theoretical physicist who wrote books on the mysteries of the universe which gained widespread popularity, such as A Brief History of Time. He was one of the best known scientists in the world and made major discoveries to do with the Big Bang theory and black holes. He was diagnosed with ALS at the age of 21, and despite the disease leaving him paralyzed and reliant on technology to speak, it progressed slowly enough that he lived to the age of 76. He once said: “However difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.” His ability to live with ALS for five years has aided research into the rate of progress of ALS conducted by places like the ALS Therapy and Development Institute.
Steve Gleason is a former professional football player for the New Orleans Saints. He was diagnosed with ALS at the age of 31 and alongside his wife Michel Varisco, has founded Team Gleason, which aims to show people with ALS can still thrive in their lives despite the effects of the disease. In addition to his foundation’s fundraising for assistive technology for people living with ALS, he helped create the Steve Gleason Act, which ensures people on Medicare have access to communication devices, and later helped cause Microsoft to create eye-tracking technology for power wheelchairs for people with significant disabilities.
Frequently Asked Questions About ALS (FAQ)
(Keywords: what is ALS, what are ALS symptoms, how does ALS affect people, how can I start an ALS fundraiser, how do I donate to ALS)
What is ALS?
ALS (Amyotrophic Lateral Sclerosis) is a progressive neurodegenerative disease that affects people’s nerve cells in the spinal cord and brain. It gets progressively worse over time and stops people’s ability to walk, speak, and even breathe. It usually affects people aged between 40 and 70, and affects around 5,000 people in the US each year. Survival is usually between two and five years. There is currently no cure and no known cause.
What are ALS symptoms?
Symptoms usually start with muscle twitching and muscle weakness in the hands and limbs, and causes people to trip up or drop things. It can also affect people’s speech and cause it to become slurred, and can cause uncontrollable periods of laughing and crying. The onset of symptoms are usually gradual and the diagnosis is made following a series of diagnostic tests including taking blood and urine samples, X rays and neurological examinations.
How does ALS affect people?
ALS is a type of motor neurone disease (MND) that affects the nerve cells in the body, causing the muscles to become weak and eventually paralyzed. The nerve cells in the brain and spinal cord degenerate over time until they eventually die, which causes the brain loses control of the muscle movement and motor functions in the body. It stops people from being able to hold a pen, lift a coffee cup, dress themselves, and eventually to walk, speak or breathe.
ALS is a devastating disease that not only affects people physically but also takes a huge emotional toll on those diagnosed and their loved ones. Many people with the disease and their carers experience clinical depression.
Can ALS be cured?
There is no known cure for ALS but there are a number of scientific research studies and clinical trials constantly taking place to identify the cause of the disease, drugs that may help extend people’s lives, and eventually, a cure. There are currently only four drugs approved by the FDA to help people with their symptoms. Read more on them here.
How can I help someone with ALS?
The most accessible way to help people with ALS is to provide financial support by donating either to individual fundraisers or to established charities and nonprofits. You can also help to provide emotional and physical support to anyone you know affected by ALS, or through volunteer programs arranged by nonprofit organizations.
How can I start an ALS fundraiser without a nonprofit?
Crowdfunding platforms like GoFundMe allow you to start an ALS fundraiser for yourself, someone you know affected by ALS, or a charity without being connected to a nonprofit. You can set up a fundraiser for free on GoFundMe and start raising funds straightaway. GoFundMe does not charge a platform fee. Instead one small transaction fee (2.9% + $0.30) is automatically deducted per donation – that’s it.
Make a difference with ALS and start fundraising today
ALS awareness and fundraising is vital because there is currently no cure. Scientists are dedicated to making research breakthroughs and finding drugs that can help prolong people’s lives, but the short life expectancy that comes with an ALS diagnosis means that patients need help now.
You can donate to individual ALS fundraisers, established ALS charities or volunteer on fundraising projects to help make an impact in the fight against ALS, or even start your own fundraiser to help those in need.
As the ALS Ice Bucket Challenge has shown, even the smallest of actions can lead to life-changing impact.