Lee Wilson, at just 29 years old, faces challenges that no one her age should have to confront. While she and her husband dream of starting a family, Lee is also making end-of-life plans. Having watched both her father and grandmother suffer from ALS, Lee knows all too well the impact of the disease. After undergoing genetic testing and counseling, Lee learned she carries a gene mutation that makes it likely she will one day be diagnosed with ALS and could potentially pass the mutation on to her future child. She describes it as living under a dark cloud, but despite the uncertainty, Lee is determined to do whatever it takes to help find a cure.
Research is critical in the fight against ALS. Yesterday the ALS Association released a statement about proposed funding cuts to vital research funding could derail years of progress, putting lives at risk and setting ALS research back decades. Turning ALS from fatal to livable – and curing it – requires robust investment in research and access to high-quality care. Slashing these resources puts both scientific progress and the well-being of individuals living with ALS in jeopardy.
What You Can Do
It’s time to act. Contact your Members of Congress and urge them to protect ALS research funding. Share why this issue matters to you and to those living with ALS, including our veterans who are disproportionately affected.
Importance of Genetic Testing & Counseling
Genetic testing looks for changes, also called mutations, in your DNA. When these mutations occur in specific genes, they can cause ALS or increase your risk of developing the disease. While there are both benefits and risks to genetic testing, your test results can help you find a clinical trial you may qualify for, which could lead to a better outcome for you or people who have ALS in the future. The results could also enable your doctor to prescribe a gene-targeted therapy (if and when they are approved by the FDA). Understanding your genetic background can also help you make decisions about family planning.
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