Michael Vesci's Run for Susie at the 2019 NYC Marathon

Amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease) is a progressive neurodegenerative disease that effects the motor neurons in the brain and spinal cord that control voluntary muscle movement. 

This progressive degeneration continues until these motor neurons die, severing the brain’s ability to initiate and control muscle movement, including the ability to speak, eat, move, and, ultimately, breath. 

Roughly 75% of all ALS patients begin to experience muscle weakness in the hands, arms, feet, or legs, which is called limb-onset ALS, and the remaining 25% of people with ALS first show signs of slurred speech, which is called bulbar-onset ALS. 

No matter the type, ALS is 100% fatal and there is no known cure. Most people with ALS live about 2-5 years after experiencing their first signs of the disease. 

What are some treatments available to those living with ALS? 

As there is no known cure (though there are promising emerging treatments, including those focused on stem cell, antioxidant, motor neuron shielding, and immune system-modulating strategies), the “treatment” of ALS boils down to symptom management. ALS requires a multi-disciplinary approach that ensures a persons physical, psychological, and nutritional needs are all being met. 

This requires a team of therapists (e.g. speech, occupational), caregivers, and palliative specialists, in addition to assistive technology, which can include invasive/non-invasive ventilators, power wheelchairs, and eye tracking technology. 

Quite simply, every single donation made to The Susie Foundation goes exactly where it should: towards serving families living with ALS across southern New England.

In an effort to alleviate one of the most significant burdens of ALS, our specially designed Flex Grant Program provides financial assistance directly to families who need it most.  This unique support program provides families with reimbursement funds to help cover out of pocket expenses that are not typically covered by private insurance, Medicare, Medicaid, or other assistance programs.  This ultimately, help individuals living with ALS to continue living safely and comfortably in their own homes.  

Since we launched our Flex Grant Program in 2014, we have provided over $100,000 to families across southern New England and have helped people living with ALS pay for everything from bathroom modifications and wheelchair ramps, to in-home healthcare services and adaptive medical equipment.  

Joining Team Susie is the perfect opportunity to make your miles count this year by running in support of local families struggling with the burdens levied by an ALS diagnosis. 

Like me, other team members can access a one-of-a-kind training and race day experience, while participating in a fun, inspiring, and team-centered race experience that's led by top-notch coaches who help each team member achieve athletic and fundraising success!   

2019 Team Susie members will enjoy: 

- Free race registration!  

- Personalized and on-call training assistance!  - Awesome group training runs!  

- Access to a free fundraising web page!  

- 24/7 support from trained, professional fundraisers!  

- Entry into Team Susie social media groups to connect, engage, and network with fellow athletes!  

- Super sweet team uniform for race day!  

- The satisfaction knowing that each mile will go towards helping local families living with ALS!   

So reach your goals this year while helping a local families living with ALS reach theirs!   

For more info, including fundraising minimums, and to sign up visit www.thesusiefoundation.org/teamsusie