Team Hilliard Foundation’s mission is raising awareness about ALS and supporting research, treatments, and families facing Lou Gehrig's Disease.
Please Help Us Strike Out ALS!
Lou Gehrig is forever tied to Major League Baseball. The Hilliard family, too, is forever tied to baseball. We lost our Jim just four years after being diagnosed with ALS. During this time, our son Sam was pursuing his Major League Baseball Career with the Colorado Rockies. Fortunately Jim got to see his son make is Major League Debut in August of 2019. We each became advocates for ALS awareness over these past years and together, we feel continuing to raise awareness about this devastating disease is an opportunity to inspire people to live compassionately, love deeply and bring about an end to this awful disease.
In the fall of 2021 just after Jim’s passing, our family decided to start our own Team Hilliard Foundation Charity to continue efforts to raise awareness, support research organizations and families facing ALS. Team Hilliard Foundation is a 501C3 #88-0586983 non profit organization.
What is ALS?
Amyotrophic Lateral Sclerosis (ALS), also commonly known as Lou Gehrig’s Disease, is horrible. It slowly kills the body’s motor neurons, paralyzing every muscle in the body until patients lose their ability to walk, talk, eat and eventually breathe. Today, there is no cure. Life expectancy is 2-5 years.
ALS Now: ALS is rare and the patient base does not really grow in size. Every 90 minutes someone is diagnosed, and every 90 minutes someone loses their battle. Because of this very small subgroup, ALS does not receive a lot of funding through various other systems. Grassroots fundraising, like the Ice Bucket Challenge, is key to advancing research. The Ice Bucket Challenge was a brief but amazing event that helped lead to the approval of Radicava in May 2017. Radicava is the first ALS drug in 22 years to be approved by the FDA but has shown little promise to slow the progression of the disease. There are other promising drugs in the pipeline but no easy to access for patients.
The Accelerating Access to Critical Therapies for ALS Act was signed into law on December 23, 2021. https://iamals.org/updates/act-for-als/ This is great news!
Meet #TeamHilliard….we are now publicly sharing our story because there is a desperate need for funds to help advance research. ALS is rare and the patient base does not really grow in size. Every 90 minutes someone is diagnosed, and every 90 minutes someone loses their battle. Because of this very small subgroup, ALS does not receive a lot of funding through various other systems. Grassroots fundraising, like the Ice Bucket Challenge, is key to advancing research. The Ice Bucket Challenge was a brief but amazing event that helped lead to the approval of Radicava in May 2017. Radicava is the first ALS drug in 22 years to be approved by the FDA and has shown promise to slow the progression of the disease by 33%. Other drugs that might slow progression are also currently in pre-clinical and clinical trials. The strategy to fight back against ALS is simple. Find ways to slow down the progression while research can continue to advance towards either halting its progress or even reverse it.
Go to ALS Therapy Development Insititue for more information.
"Supporting research, treatments and the fight for a cure as well as supporting organizations that support families facing ALS is the right thing to do.
Help us raise funds and fight back.
Thank you so much for your support!
#TeamHilliardFoundation