Skip to main content

In the bustling town of Amherst, Massachusetts, one man’s passion for running has transcended the finish line to make a profound impact on the lives of those battling a rare genetic disorder. Meet Adam Smith, a dedicated runner who took on the challenge of the Boston Marathon not once, but twice, all in the name of raising funds and awareness for Lysosomal Acid Lipase Deficiency (LAL-D).

A Runner with a Purpose

Adam Smith’s journey began with a simple yet powerful idea: to use his love for running as a catalyst for change. Inspired by the stories of individuals living with LAL-D and driven by a desire to make a difference, Adam embarked on a mission to raise funds to support groundbreaking research in the field.

Racing Towards Hope

In 2022 and 2023, Adam laced up his running shoes and joined the ranks of thousands of athletes participating in the iconic Boston Marathon. With every stride, he not only pushed his physical limits but also pushed the boundaries of what was possible in the fight against LAL-D.

Supporting Dr. Paul Martin’s Research

The funds raised by Adam’s marathon efforts are dedicated to supporting the pioneering work of Dr. Paul Martin at Nationwide Children’s Hospital. Dr. Martin’s research focuses on developing gene therapy treatments for LAL-D, a rare disease that causes hypercholesterolemia and liver disease. Currently, the standard treatment for LAL-D involves bi-weekly infusions for life, posing significant challenges for patients and their families.

Driven by a deeply personal connection to the cause—his daughter Ella suffers from LAL-D—Dr. Martin’s research has yielded promising results. In mouse models, the gene therapy approach has shown positive outcomes, offering hope for a potential cure for this debilitating condition. However, the road to progress is paved with challenges, including the need for additional funding to expand the research team and accelerate the pace of discovery.

Every Mile Counts

As Adam Smith continues his marathon journey, his unwavering commitment serves as a beacon of hope for individuals living with LAL-D. With every dollar raised, he brings us one step closer to a future where gene therapy offers a lifeline to those in need. Together, we can support Dr. Paul Martin’s groundbreaking research and empower individuals like Ella to live healthier, fuller lives free from the burden of LAL-D.

How You Can Help

  • Donate: Every contribution, no matter how small, makes a difference in the fight against LAL-D. Consider making a donation to support gene therapy research and help accelerate the pace of discovery.
  • Spread the Word: Share Adam Smith’s story and Dr. Paul Martin’s research with your friends, family, and community. By raising awareness, we can build a network of support and solidarity for individuals living with LAL-D.
  • Get Involved: Whether it’s participating in a fundraising event, organizing a charity run, or volunteering your time and expertise, there are countless ways to get involved and make a meaningful impact in the fight against LAL-D.

Adam Smith’s marathon journey exemplifies the power of passion, perseverance, and compassion in the face of adversity. Through his tireless efforts, he is not only raising funds but also raising hope for a brighter future for individuals living with LAL-D. Together, let’s join hands and run towards a world where gene therapy offers a beacon of hope for all those affected by rare diseases.