The Urgent Need for More ALS Funding: Why Every Dollar Counts

I ask many of you to contribute to many of my ALS causes, whether helping ALS families through the Kerry and Gary Challenge or donating to ALS research. Here’s why my asks are so very important:

Amyotrophic Lateral Sclerosis (ALS) is a disease that has left too many families in heartbreak, too many patients without hope, and too many researchers struggling to find the answers that could save lives. Despite being first identified over a century ago, ALS remains a devastating and fatal condition with no known cure and only limited treatment options. While progress has been made, the pace of discovery is not fast enough—and that’s why we urgently need more funding for ALS.

 

 ALS: A Relentless Disease

ALS, often referred to as Lou Gehrig’s disease, affects the motor neurons in the brain and spinal cord, leading to progressive muscle weakness, paralysis, and eventually death, usually within 3 to 5 years of diagnosis. Like me, this cruel disease robs people of their ability to walk, talk, eat, and breathe, yet their minds remain fully intact. Imagine being trapped in a body that no longer responds while your mind stays sharp and aware. This is the brutal reality for me and ALS patients.

For most, the onset is sudden and the progression swift, leaving little time for patients and their families to adjust to the life-changing impact of the diagnosis. Within 6 months, I couldn’t walk and was in a wheelchair. Within 2 years I couldn’t breathe, eat or swallow, speak, and was on a ventilator 24/7. So, my progression was very fast! With only two FDA-approved drugs that can modestly slow disease progression in some cases, patients and families are often left with little more than hope that research will soon deliver new treatments.

 

 Why More Funding Is Critical

The science of ALS is complex, and while researchers are making strides, we are still far from a cure. Only a fraction of the necessary research projects are being funded due to limited resources. Without enough funding, we can’t move fast enough to discover the causes, identify biomarkers, or test new treatments in clinical trials. Here's why more funding is absolutely crucial:

 1. Accelerating the Pace of Discovery

Compared to other neurodegenerative diseases, ALS research is underfunded. ALS affects fewer people than conditions like Alzheimer's or Parkinson’s, making it harder to secure government and private funding. Yet, the scientific challenges posed by ALS are no less significant. The lack of funding means that research that could lead to breakthroughs is often delayed or never pursued. More funding would allow scientists to run more studies in parallel, explore new avenues, and quickly pivot when certain hypotheses show promise.

 2. Fast-Tracking Clinical Trials

Clinical trials are essential for developing and testing new drugs, therapies, and treatments. However, these trials are expensive and time-consuming, and only a limited number of ALS patients get the chance to participate. With increased funding, more clinical trials could be conducted, allowing patients to try new therapies that could slow or stop the disease’s progression. We can’t afford to wait—patients don’t have time on their side.

 3. Funding Cutting-Edge Technologies

Recent genetic and molecular biology advances have opened new doors in ALS research. Techniques like CRISPR gene editing, stem cell therapy, and RNA-targeted treatments have shown tremendous potential. However, these innovative technologies require significant financial investment. The more funding we provide, the more likely researchers are to make discoveries that could revolutionize how ALS is treated.

 4. Filling the Knowledge Gap

ALS is still a mystery in many ways. For 90% of ALS cases, there is no clear genetic link, making it difficult to pinpoint the exact cause. Research funding helps uncover the biological and environmental factors that contribute to ALS, which is essential for developing preventive strategies and targeted treatments. Without this knowledge, we are fighting blindly against a formidable enemy.

 5. Supporting Patients and Families

Beyond research, ALS funding helps provide essential services for patients and their families. From specialized equipment like communication devices and mobility aids to in-home care and support groups, the costs of living with ALS are astronomical. It costs over $250,000 EVERY year to care for someone living with ALS. Most of those costs are out of pocket because insurance typically does not cover caregiver expenses. More funding means more support for these families, helping them manage the overwhelming emotional, physical, and financial burden of this disease.

 

 The Ripple Effect of ALS Research

The research from ALS studies doesn’t just impact those living with the disease—it has broader implications for other neurodegenerative conditions like Alzheimer’s, Parkinson’s, and Huntington’s disease. The insights gained from ALS research contribute to our understanding of the nervous system as a whole and may lead to treatments that benefit millions of people worldwide.

 

 How You Can Help

The fight against ALS cannot be won without the collective effort of individuals, organizations, and governments. Here’s how you can make a difference:

- Donate to ALS: Every dollar counts. Your contribution could fund the next groundbreaking study or help a family afford to care for their loved one.

- Raise Awareness: Share information about ALS with your network. The more people know about the urgent need for funding, the more we can rally support.

- Advocate for Increased Government Funding: Join the voices calling for more significant investment in ALS research from national health organizations and governments.

- Participate in Fundraisers: Walks, rides, and challenges that raise money for ALS are critical to keeping research moving forward. By participating, you’re helping fund the future.

 

 Conclusion: Time Is of the Essence

ALS is an urgent, life-threatening disease. Every day, another person receives a diagnosis, and every day, more lives are cut short. It may not save my life, but we cannot afford to wait any longer. We have the knowledge, the scientists, and the tools to make significant progress—but we need the funding to match the enormity of the task. With your help, we can accelerate research, provide better care, and, most importantly, bring hope to those living with ALS.

Together, we can push forward toward a future where ALS is no longer a death sentence but a treatable—and curable—condition. Let's make it happen, one donation at a time.

If you would like to donate to ALS research, please click on this link: https://www.als.net/

 

If you would prefer to give to ALS families, please click on this link: https://thekerryandgarychallenge.com/

Living Invisibly: The Struggles and Strength of Life with ALS

Imagine living in a world where, day by day, your body becomes less your own. My mind remains sharp, my thoughts as vivid and alive as ever, but my ability to express those thoughts has been lost or severely compromised. That’s the experience of living with ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

Now, add to that another layer: invisibility. Not the kind you see in sci-fi movies, but emotional and social invisibility that slowly creeps in as your body changes and people don’t know how to react. ALS is a condition that gradually strips away your physical independence. Still, another, more subtle loss comes with it—the feeling of being overlooked, misunderstood, or even invisible in the eyes of society.

 

The Physical Decline and Social Isolation

ALS is often called “the disease that doesn’t sleep” because it progresses day after day. At first, it may start with minor muscle weakness, a stumble, or slurred speech. My symptoms began with my inability to hit the rim while shooting free throws. But eventually, everyday tasks—eating, walking, talking, breathing—become monumental hurdles. And as your physical capabilities diminish, so does your visibility to the outside world. I, for one, am very thankful for social media and the internet!

It’s easy to feel invisible when your condition becomes a barrier to social interaction. Friends and even family might withdraw (my family and friends have been incredibly loving and supportive of me and Carol), or unsure how to communicate or relate to me anymore. I’ve found that using my eye-gaze computer, people often lose patience with me because it takes me so long to type my response and speak. I feel pressure to respond much faster, often with shorter responses without the in-depth response I would have preferred.

Others might assume that because your body is weakening, your mind must be too—leading to uncomfortable silences or conversations that happen “around” you rather than “with” you. You become a silent observer of your own life, trapped in a body that feels foreign.

 

Misconceptions and Misunderstandings

One of the greatest frustrations of living with ALS is how little the public understands about the disease. For many, it remains an abstract concept, only brought to the forefront during fleeting media moments like the ALS Ice Bucket Challenge. But the daily realities—how ALS transforms every aspect of life—are often hidden from view.

Many people assume that if someone with ALS can’t speak or move, they must also lack awareness. This couldn’t be further from the truth. For most, ALS doesn’t affect cognitive function, which means that while their body is failing them, their mind remains intact. They think, they feel, they want to engage—but the ability to do so on their own terms is limited, leading to that crushing feeling of invisibility.

 

Coping with the Mental and Emotional Toll

There’s an emotional toll that comes with being physically present but socially overlooked. Feelings of isolation, frustration, and sadness are common, but there’s also resilience—an unspoken strength that many people with ALS develop over time.

Finding ways to maintain a sense of visibility, agency, and self-expression becomes crucial. Whether through technology—such as speech-generating devices—or through art, writing, or other creative outlets, many living with ALS strive to be heard in a world that may not always listen.

Support networks are also essential. While some friendships may fall away, others deepen. ALS support groups, whether in person or online, provide a vital community where people understand your challenges. It’s a space where you’re not invisible but fully seen and heard.

 

Navigating a World That Isn’t Built for You

Accessibility remains one of the most significant barriers for people living with ALS. The world is not designed for those who struggle with mobility or communication. Simple things, like getting into a restaurant or traveling (imagine me being lifted out of my wheelchair into my airplane seat, now imagine traveling with a ventilator and all the backup equipment that comes with it), can become significant challenges. This lack of accessibility can further contribute to feeling sidelined or forgotten. Carol and I always enjoyed traveling. Many places remain on our bucket list, but alas, they will remain on our bucket list.

Advocacy for greater accessibility and inclusivity is vital. Every ramp, voice-to-text tool, and adaptable device helps create a world where people with ALS—and others living with disabilities—can feel more present and less invisible.

 

The Power of Acknowledgment

Being visible doesn’t just mean being physically seen; it means being genuinely acknowledged for who you are beyond your condition. Those living with ALS are people with stories, dreams, fears, and ambitions, just like anyone else. They want to be part of the conversation, part of society, and not defined solely by their illness.

For those who don’t know how to engage with someone who has ALS, the answer is simple: talk to them. Ask them about their day, their thoughts, and their interests. Acknowledge them as a person, not just a patient. Doing so, you help break down the walls of invisibility that ALS often builds around them.

 

Conclusion: Strength in Visibility

Living with ALS is challenging enough without the added burden of feeling invisible. By sharing stories, raising awareness, and fostering meaningful connections, we can help people with ALS reclaim their visibility and, in turn, their humanity.

Everyone deserves to feel seen, heard, and valued—no matter their challenges. And for those living with ALS, that acknowledgment can be one of the most potent gifts the world can offer.

Let’s work to create a more inclusive, compassionate world where everyone, no matter their abilities, feels visible and valued.

#maketodayyourbestday #EndALS #FaithoverFear