The Charlie Fund

Charlie Skubas lettered in five sports in high school before going on to Yale, where he played varsity football and baseball. Even while raising a family and building a career, he was still a sportsman. Charlie often gave his time coaching in youth leagues and was a two-handicap golfer.

ALS, or Lou Gehrig’s Disease, put an end to that. Over the course of three years, Charlie largely lost control of his body before passing away in 2011. Out of their great affection for Charlie, respect for the Skubas family’s bravery, and a desire to advance the fight against ALS and diseases like it, his friends formed The Charles E. Skubas YC ’66 Fund for ALS Clinical Support and Research. During his last year, although seriously impaired by ALS, Charlie played a key role in launching the fund that was created in his honor.

Many years ago, scientists grouped neurodegenerative diseases by their devastating symptoms. Now, based on recent genetic scans and new biochemical investigations, researchers are exploring links at the molecular level. They have separated multiple sclerosis, an autoimmune disease, from amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease), Alzheimer’s and Parkinson’s Disease, which are degenerative, neurologic diseases fundamentally involving mistakes in protein folding. Our bodies constantly fold long chains of amino acids to form three-dimensional proteins. Mistakes in this intricate process are linked to these diseases and many cancers. This information is key to developing drugs that can stop these diseases in their tracks. Yale scientists have made seminal discoveries about the mechanisms behind neurodegenerative disease:

• The molecule NOGO prevents nerve fiber growth. Blocking NOGO’s action could help patients with nerve damage heal.
• Certain heat shock proteins function as “protein folding machines.” They play a key role in these diseases, particularly ALS.
• A virus causes some protein misfolding diseases. This surprising finding offers hope for prevention.

Neurodegenerative diseases are devastating. For example, as the population ages the incidence of Alzheimer’s Disease is alarmingly on the rise, already afflicting as many as 5 million Americans. There is no time to waste in putting scientific discovery to work. Yale School of Medicine is uniquely positioned to bridge the gap between laboratory scientists and clinicians to develop new diagnostic and therapeutic approaches. These interdisciplinary teams are best led by physician-scientists living in both worlds. Yale is home to renowned basic neuroscientists and cutting-edge clinical neurology programs, among the best in the US. The Chairman of the Department of Neurology, Dr. David Hafler, is a physician-scientist who has performed groundbreaking work in multiple sclerosis. No institution has a stronger foundation to build upon to accomplish this critical work. Our goal is to prevent neurodegenerative disease in a single generation.

Skilled and compassionate management makes an enormous difference in the lives of patients and their families. Even as we search for a way to prevent these diseases, we are intent on offering state-of-the-art care to patients today as well as access to emerging therapies through clinical trials. Our interdisciplinary staff can connect families to supportive services. Yale neurologists play leadership roles in such organizations as the North Eastern ALS Alliance and the World Federation of ALS Neurology Consortium.

The Charlie Fund is building a team at Yale that will bridge the laboratory and clinical worlds and develop effective prevention against neurodegenerative disease. It is also enhancing the care and support available to patients today. Donations to the Charlie Fund may be made by making a check payable to Yale University and sending it to: