The roots of The Susie Foundation can be traced back to November 7th 2009 – the day Susan Ready Matthews was diagnosed with Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease).
While struggling with the disease, Susan and her family took their first foray into fundraising, raising over $11,000 in 2010 in support of Susan’s Walk to Defeat ALS and The ALS Association of Connecticut. The outpouring of love and support during this fundraising effort helped to provide Susan with hope and optimism, furthering her resolve as she struggled with the worst ALS has to offer.
Following Susan’s passing on April 17th 2011, her family decided to continue this legacy of service, launching The Susie Foundation in 2013 with the hope of alleviating some of financial burdens levied on individuals and families following diagnosis. Since that time – and while being wholly volunteer led – The Susie Foundation has raised over $350,000 to support persons living with ALS across Southern New England.
The Susie Foundation is working tirelessly to build on this legacy of service to ensure local persons living with ALS, as well as their families and caregivers, can access life-enhancing funding, services, and technologies to ensure they are able to continue to lead rich and meaningful lives.
We support the families we serve in two unique ways:
Flex Grant Program
Our Flex Grant Program provides financial assistance to families to help alleviate expenses that are not traditionally covered by private insurance, Medicare, Medicaid, and other assistance programs. This ultimately, help individuals living with ALS to continue living safely and comfortably in their own homes.
Since we launched the program in 2014, we have provided over $100,000 directly to families living with ALS through reimbursement grants totaling up to $1,000 each. These grants have helped cover the costs of everything from home modifications and wheelchair repairs, to dietary supplements and clinic copays.
ALS Youth Mentoring Initiative
Our ALS Youth Mentoring Initiative brings the power of one-to-one mentoring to the lives of children who have a parent, guardian, or family member living with ALS. Within an evidence-based and outcomes-focused program model, the ALS Youth Mentoring Initiative builds on the best practices of community-based mentoring to bring an intentionally designed, high-quality, and professionally supporting one-to-one mentoring model to the lives of children impacted by ALS.
In this program, screened, trained, and professionally supported volunteer mentors works closely with parents and agency staff to provide their mentees with dedicated time and attention for at least a few hours a couple of times each month. During unstructured bi-weekly activities, filled with conversations and shared activities, mentors and mentees develop a relationship that helps youth manage the everyday challenges of growing up alongside ALS.
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