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Meet Our Director of Navigation: Aditi Narayan Minkoff

September 18, 2019  -  Aditi Narayan Minkoff

I learned about the power of hope when my grandfather was first diagnosed with cancer. Even after his diagnosis, I never lost hope that he would live to be my forever cheerleader, be at my wedding, meet his great-grandchildren and continue to be an incredible reminder of how to live with integrity and kindness. Losing him on November 30, 2016 broke a part of each of us in my family that will never be repaired and left a hole in this world that will never be filled. It was his decade-long fight against cancer that led me to health care, and his spirit that led me to see that despite losing him, this system is filled with hope. 

My entire career has been focused on understanding and responding to the needs of patients and caregivers - to empower them to be active participants in their health care, to hold space for their myriad emotions, to celebrate their successes, and fight on their behalf for better care and support. As former Director of Programs & Strategy at LIVESTRONG, I worked with patients and their families, community organizations, hospital systems, health care professionals and advocates to make this our primary priority, along with ensuring patients and caregivers were involved in every crucial conversation about the programs and services that would impact them directly. All the initiatives I led were developed in response to what patients and caregivers needed. 

As Director of Navigation at I AM ALS, my goal is to understand and respond to the needs of ALS patients, their families and caregivers, and amplify their voices to create the change they want to see. We will do this by developing a national support program in collaboration with multiple partners to help this community navigate the complex health systems and community services needed to manage and fight ALS. 

I hope for equitable access to affordable care, faster research, consolidated efforts to tackle problems together, and hope for the courage to change what doesn’t serve our community and build something for us, by us. 

I AM ALS is patient-led and patient-centric.

It is for the community, by the community. 

It surrounds you with advocates so you know you’re not fighting alone. 

It shares hope during a time of devastation. 

And like Christopher Reeve said, “once you choose hope, anything is possible.” 

I am grateful to every patient, caregiver and loved one affected by ALS for welcoming me into your community, and I am deeply honored to be a part of this incredibly powerful movement. I am calling on everyone who has ever been a patient, caregiver, loved one, friend and more - choose hope.

Let’s fight for the people who will always be our forever cheerleaders and incredible reminders of how to live with integrity and kindness. Together we can and will defeat ALS.

With gratitude,

Aditi

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