Standing Strong Against ALS

Standing Strong
Against ALS

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Our Mission

Founded with a simple yet powerful idea, Shady Strong aims to create a supportive network that embraces and uplifts families who experience the isolation and challenges that come with facing ALS. We strive to enhance the quality of life and address gaps in services for the entire family experience of living with ALS, beyond just physical needs.

Our Story

Shady Strong was founded in 2019, inspired by the enduring legacy of compassion and service of our founders’ father: Robert J. Shady. Bob's unwavering spirit and commitment to others shone through, even in the face of this challenging diagnosis. Although we have a soft spot for veterans, our impact spans far and wide, touching the lives of individuals from all walks of life.

From humble beginnings in 2019, our organization has grown into a beacon of hope and solidarity, supporting families through financial means, equipment donations, caregiver support initiatives, and community events. Whether it's connecting young caregivers to programs that offer mentorship, providing assistance to families facing financial hardship, or helping individuals on their journey through ALS, Shady Strong continues to make a meaningful difference in the lives of others.

We are Shady Strong and we are committed to filling in gaps in services at a grassroots level and making make a lasting impact in New York and beyond.

Remembering Robert J. Shady: A Life Lived with Strength and Service

Robert J. Shady, affectionately known as Bob, faced the battle of his life when he was diagnosed with bulbar onset ALS in May 2018. Coming from a background of proud military service with the United States Army during the Vietnam era, Bob's unwavering spirit and commitment to others shone through, even in the face of this challenging diagnosis.

As the effects of ALS gradually impacted his speech and muscles, Bob sought support from the Syracuse Veteran's Association, marking the beginning of a vital support network that accompanied him throughout his journey. With the assistance of organizations like the Paralyzed Veterans of America, Bob strived to maintain his independence, displaying remarkable resilience in the face of increasing limitations imposed by the disease.

Despite the immense challenges he faced, Bob's faith remained unshakable, and his generous and selfless nature continued to touch the lives of those around him. Whether it was lending a helping hand to a friend or a stranger in need, Bob's enduring legacy of compassion and service inspired the birth of Shady Strong, a poignant testament to his unwavering spirit.

Today, the legacy of Robert J. Shady lives on, carried forward by Shady Strong, a symbol of his love for his family and friends, and his dedication to serving others. Though Bob may no longer be with us, his impact and the strength of his character continue to resonate, shaping the ongoing mission of Shady Strong as a beacon of hope and support for those affected by ALS.

Learn more about Robert J. Shady
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Our Impact

Since launching, Shady Strong has proudly raised over $150,000 to support ALS awareness initiatives and provide direct assistance to families throughout New York State.

These funds have gone toward:

Supplying essential communication and mobility equipment such as Tobii Eyegaze devices, power wheelchairs, and adaptive technology — all at no cost to recipients.

Providing ALS home equipment including hospital beds, Hoyer lifts, walkers, and other items to improve comfort, safety, and accessibility in the home.

Covering therapy and care expenses not covered by insurance.

Providing emergency financial relief to families managing the daily challenges of ALS.

Expanding our Caregiver Box Program, which now ships nationwide, offering mental health and self-care support to those caring for loved ones with ALS. Each box is personalized with items that bring comfort, encouragement, and a reminder that caregivers are never alone.

“Shady Strong is more than just an organization—it’s a beacon of hope, a lifeline for those battling ALS and their families. "

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“As someone navigating the challenges of ALS myself, I’ve had the privilege of witnessing firsthand the incredible impact they make in the lives of individuals facing this relentless disease. Through their unwavering dedication and tireless efforts, Shady Strong not only raises vital funds for ALS research and support services but also provides a community of strength and solidarity for those affected. Together, we are stronger with organizations like Shady Strong leading the charge.” -BiggMike Reynolds

Impact Stories

$10,000 sponsorship of Hope Loves Company

In 2024 we were able to support HLC with a $10,000 donation to support Camp HLC which is a three-day, overnight retreat for children and young adults, ages 6-21, who have or have had a loved one battling ALS. Our goal in 2024 is to spread awareness of Hope Loves Company to families in upstate NY and send multiple families to this amazing weekend retreat that is free of charge to the ALS community!

6,000 flags, 6,000 souls, 6,000 families all connected through ALS

We were thrilled to help I AM ALS by placing 6,000 flags bearing the names of those living with ALS, those we have lost to ALS, and ALS gene carriers on the National Mall in Washington D.C as part of ALS Awareness Month in both 2022 and 2023. Shady Strong's involvement in the display of 6,000 flags, meetings with state senators, and the establishment of connections with national-level foundations exemplifies the impact that we can achieve through collective advocacy and fostering collaborations to combat ALS on a broader scale.

Special Care Baskets for Veterans

In 2022, Shady Strong launched its inaugural initiative, inviting veterans affiliated with the Syracuse VA to participate in "Hope For the Holidays". This program aimed to spread hope and foster a sense of community during the holiday season. As a result, seven veterans from Broome, Onondaga, Monroe, and Livingston counties were selected to receive special care baskets, designed not only for them but also for their dedicated caregivers.

These baskets were a symbol of our gratitude for their service and a gesture of support during a time that can be particularly challenging. Each basket included a handcrafted flag from Flags of Valor for the veteran as well as gift cards, self-care items and other things that are specifically requested.

Shady Strong by the Numbers

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20192020

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20222023

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20232024

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Goal ($50,000)

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BBQ Competition & Music Festival

Our Annual ALS Awareness BBQ Competition and Music Festival is our cornerstone event dedicated to raising funds and spirits alike.

Drawing together a diverse gathering of individuals, this day-long celebration embraces the essence of camaraderie, competition, and compassion. From the seasoned expertise of professional BBQ teams to the spirited enthusiasm of amateur contenders hailing from across New York State, the atmosphere is filled with anticipation as they vie for the title of Champion Pit Master.

This event is a focal point for our community, fostering hope, unity, and solidarity. It's a time to honor the resilience of those living with ALS, celebrate their strength, and garner support from individuals & organizations dedicated to making a difference. Register for 2025 here.

Learn more
2024 BBQ Competition Photo Gallery
2025 BBQ Competition Photo Gallery

Thank you to our 2025 sponsors!

Get in Touch or Request Support

If you or a loved one are affected by ALS, we’re here to help. You can reach out to us directly using the contact form below — or, if you’re seeking specific assistance, please use one of the forms below to get started:

Grant Application for Assistance

Caregiver Basket Request Form

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