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Hope Flies

Hope flies on the National Mall in Washington DC.


“Hope flutters like the wings of butterflies in a gentle breeze, created breathlessly by the pain of loss…

TJO


Representative of six thousand lives, small blue flags wave at passers-by, each with a story to share of life before this terminal condition, ALS.


The brutal reality is that Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, afflicts over 6,000 people every year. It is estimated that 30,000 Americans are currently living with ALS. With no viable treatments to change this disease from a terminal condition to a chronic one and no cure on the horizon, hope can seem out of reach for most.


ALS takes everything from those it afflicts, including the ability to move, speak, eat, and breathe. Many lose their voice and are bedridden, unable to engage in the world outside their rooms. I AM ALS (IAA) , a non-profit organization dedicated to changing this reality since its inception in 2019, has successfully altered the advocacy landscape for this terrible disease. Technology, coupled with community movement building, has allowed patients and families to address and engage stakeholders in research, regulatory agencies, and legislation.


I AM ALS will deploy 6,000 blue flags on the National Mall on May 29, 2024, each representing a life impacted by ALS and its enduring effect on those it touches. As these small, blue flags whisper in the breeze, they represent a whisper of hope for a chance at life. If you listen carefully, you will hear the echoes of lives interrupted, witnessed by the agencies that are the gatekeepers of our hope.


Leveraging the experience and relationships of its founders, IAA has empowered the once-silent ALS community to speak out, to take action and relentlessly advocate for change, racing the ALS clock. Through its national network of volunteers, led by a tiny, but very capable staff, IAA has succeeded in our nation’s legislative halls where others have failed.


Through dogged determination and persistent outreach by constituents and fellow ALS organizations, change has happened, and has led to unprecedented increases of government research funding. Thus, the relevance of this powerful installation on our national mall. A clear signal to the world; ALS will not take our collective voice as we fight to live.


J. Reyes

TJO


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