Connecticut Friends For Als Research Paper

Charles E. Skubas

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. 

Creating hope through innovation

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. 

Fast-tracking discovery 

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. 

Helping patients today 

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. 

How to Help the Charlie Fund 

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: 

Sharon R. McManus 

Yale University Office of Development 

PO Box 7611 New Haven CT 06519–0611 

Tel: 203–436–8543

sharon.mcmanus@yale.edu 

Please contact Sharon for information regarding major gift opportunities and alternative forms of contribution. As an example, funding for the position of a research scientist specializing in ALS and motor neuron disorders is seen as a critical need of the department.

Donations to the Charlie Fund may be eligible for corporate matching and can be credited towards class gifts for Yale alumni.

ALS Specific

ALS Forums and Chat
An open support community for people affected by ALS/MND.
www.alsforums.com/

ALS Independence
People Helping People
http://www.alsindependence.com/

Bruce Edwards Foundation for ALS Research
The Bruce Edwards Foundation provides funds to medical research facilities dedicated to slowing the progression of and finding a cure for Amyotrophic Lateral Sclerosis (ALS). The Foundation was created in memory of Bruce Edwards, who died from ALS after a 16-month struggle against the disease. Bruce was the longtime friend and caddy of PGA golfer Tom Watson.
www.bruceedwardsfoundation.org

Prize 4 Life
Seeking to create breakthroughs in effective treatments for Amyotrophic Lateral Sclerosis (ALS) using the leverage of large inducement prizes.
www.prize4life.org


Clinical/Research

ALS Genetic Mutation Database
Alsod.org, the online database for ALS/SOD1 genetic mutations, is designed to provide both the scientific community and wider public with up-to-date information on SOD1 associated ALS.
alsod.iop.kcl.ac.uk/

ALS Patient Care Database
ALS C.A.R.E. is a voluntary, physician-directed program to improve outcomes for patients diagnosed with amyotrophic lateral sclerosis.
www.outcomes.org/als/

ALS Therapy Development Institute
A non-profit bio-tech organization whose mission is to seek, develop, and deliver therapies to slow, arrest, and cure ALS.
www.als.net

American Society of Human Genetics
The primary professional membership organization for human geneticists in the Americas.
www.ashg.org/

Dana Brain Web
Dana.org serves as a gateway to brain information, containing general information, current research and the latest news about the brain.  "Brainy Kids Online" offers a site with activities, puzzles, links to excellent educational resources, and lesson plan suggestions.
www.dana.org/brainweb

The Eleanor and Lou Gehrig MDA/ALS Center
Founded on the belief that biomedical and genetic research are the most effective, long-term approaches to the eventual conquest of human disease. www.ColumbiaALS.org 

The Robert Packard Center for ALS Research
This center is one of the nation's largest ALS comprehensive care programs. Here you can find information about the center, links to other information sources, and articles about ongoing research at the Center.
www.alscenter.org


Health & Medical

Christopher and Dana Reeve Paralysis Resource Foundation
Created in 2002 to provide a comprehensive, national source of information for people living with paralysis and their caregivers.  The PRC is a one-stop center that offers information quickly and compassionately. 
http://www.paralysis.org/ 

Communication Independence for the Neurologically Impaired
CINI seeks to improve the quality of life for people with ALS/MND by disseminating information about communication technology.  Site includes a guide to commercially available devices and a chat room regarding augmentative communication.
http://www.cini.org/


International Organizations

ALS Society of Canada
This a national voluntary organization is committed to supporting research towards a cure for ALS and supporting ALS Partners in their provision of quality care for persons affected by ALS.
www.als.ca

International Alliance of ALS/MND
Associations on the Internet A group of more than 50 patient support and advocacy groups worldwide that have joined together to provide support and the exchange of information between the associations.
www.alsmndalliance.org

International Organizations, Motor Neuron Disease Association (UK)
They are the only national organization in England, Wales and Northern Ireland dedicated to the support of people with MND and those who care for them.
www.mndassociation.org


Travel

Transportation Safety Administration (TSA)
Information for travelers with disabilities and medical conditions
http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm

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