Advocacy and Research

5600 people are diagnosed with ALS each year in the US. An equal number of us die each year. And we lose the use of our feet, our hands and our voices before we die, which hinders our abilities to advocate. We simply cannot live long enough to make an impact on the system. Our devoted caregivers are exhausted when the end eventually comes. Conquering ALS and other neurodegenerative diseases needs to be a priority for our community and our society. We need your help.

Lou Gehrig gave his famous speech 75 years ago. Since then 350,000 Americans have died of ALS.

"ALS isn't incurable; it is underfunded."



I urge you to watch this video of a speech I gave at a golf fundraiser in August 2013. Though the visual is poor, my words are strong, and my message is heartfelt.

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With Dr Merit Cudkowicz, Chief of Neurology at Massachuseetts General Hospital and Co-Founder of the Northeast ALS Consortium (NEALS)

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Dr Cudkowicz is a leader in research and is also my physician.

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With Dr Lucy Bruijn, Chief Scientific Officer of the ALS Association

Madeline Kennedy 2018