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/
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