What is ALS and Why is It So Devastating?
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord. It causes:
- Progressive muscle weakness and paralysis
- Loss of speech
- Difficulty swallowing
- Respiratory failure
Most people diagnosed with ALS live only 2 to 5 years after symptom onset, though some live longer. Unlike other neurodegenerative diseases, ALS has no cure and very few FDA-approved ALS treatments. Its progression is rapid and relentless.
The State of ALS Research Today
Progress in ALS research has been painfully slow, not due to lack of interest, but because of underfunding and insufficient ALS clinical trial participation.
Current Challenges in ALS Research
- Limited government and philanthropic funding: Compared to Alzheimer’s or Parkinson’s, ALS receives a fraction of the research budget.
- Low participation in ALS clinical trials: Patients often don’t know how to join or are disqualified due to rapid progression.
- High research costs: ALS trials require multidisciplinary teams and long-term monitoring.
- Lack of ALS biomarkers: Reliable biomarkers are needed to track disease progression and predict outcomes.
Why ALS Needs More Clinical Research Funding
1. Accelerate Drug Development
More funding means more Phase I, II, and III ALS clinical trials, faster testing of combination therapies, and quicker approval timelines with robust data.
2. Improve Diagnostic Tools
Early diagnosis is key for enrolling in clinical trials and improving quality of life. Funding supports the development of AI-driven ALS diagnostics and biomarker identification.
3. Support Innovative Therapies
Gene therapy for ALS, stem cell therapy ALS, and CRISPR ALS research are promising but expensive. Sustained funding is essential for these innovative ALS therapies to evolve.
Real-World Impact of Funding Gaps
The underfunding of ALS research isn’t just a scientific issue:
- Families face financial strain as they lose income and take on caregiving responsibilities.
- Patients often must crowdsource for care and equipment.
- Hope is lost when promising ALS clinical trials are shelved due to lack of resources.
More funding can literally extend lives and improve quality of care.
The Ice Bucket Challenge Was Just the Beginning
In 2014, the Ice Bucket Challenge ALS campaign raised over $115 million, funding:
- The discovery of the NEK1 gene linked to ALS
- Over 200 funded research projects
- Clinical trials for new drug candidates
But momentum has slowed. Sustained ALS research funding not just one-off donations drives long-term progress.
What Needs to Happen Next?
To make a real difference for ALS patients, we need a collective push across public and private sectors:
1. Increase Federal and Philanthropic Funding
Advocate for policies that support higher ALS research budgets and incentives for rare disease research funding.
2. Raise Public Awareness
Educate more people about ALS symptoms, the urgent need for ALS clinical trials, and how to get involved.
3. Make Clinical Trials More Accessible
- Use digital tools for ALS research and remote participation.
- Simplify enrollment criteria.
- Increase transparency around eligibility for ALS clinical trials.
4. Encourage Industry Collaboration
Biotech, pharma, and patient advocacy groups must work together to streamline ALS R&D and clinical trial pipelines.
How Patients Can Contribute to ALS Research
You don’t need a medical degree to make a difference in ALS research:
- Join or support ALS clinical trials
- Donate to ALS research organizations
- Share your ALS story on social media to raise awareness
- Advocate for increased ALS research funding at the local or national level
Conclusion: PatLynk Is Bridging the Gap Between Patients and Research
The future of ALS research depends on funding, participation, and innovation. Without all three, we risk stalling progress on a disease that desperately needs attention.
At PatLynk, we make it easier for patients to access clinical trials that meet their unique needs. Whether you’re exploring innovative ALS treatments or considering trial participation as part of your care journey, PatLynk connects you with opportunities that can make a real difference. Our mission is to empower patients to access the latest medical advances, because everyone deserves access to healthcare innovation.
