Sunday, February 22, 2009

ALS Revisited


To bring you up to date: Last September we wrote a blog post on ALS. The acronym stands for Amyotrophic Lateral Sclerosis. It is a motor neuron disease, first identified in 1869 by the noted French neurologist Jean-Martin Charcot. Although the cause of ALS is not completely understood, the 1990's have brought a wealth of new scientific understanding about the physiology of this disease. Superstar baseball player Lou Gehrig brought national and international attention to ALS when he suddenly retired from baseball after being diagnosed with ALS.

Although the disease is often called “Lou Gehrig’s disease” it has affected many notable individuals including Hall of Fame Pitcher Jim "Catfish" Hunter, Senator Jacob Javits, actors Michael Zaslow and David Niven, creator of Sesame Street Jon Stone, television producer Scott Brazil, boxing champion Ezzard Charles, NBA Hall of Fame basketball player George Yardley, pro football player Glenn Montgomery, golfer Jeff Julian, golf caddie Bruce Edwards, musician Lead Belly (Huddie Ledbetter), and photographer Eddie Adams. Most recently, in my sphere of friends and family it has stricken Brian Nikolich.

Brian is a Hokie – not that I hold that against him. The Virginia Tech grad is in his mid-thirties with a loving wife and two beautiful kiddies. He is a Licensed Civil Engineer living in South Carolina who first had a hint of symptoms about 2 years ago. His blog can be read at He can be found on Myspace, Linkedin and Facebook.

Brian is a gifted young man who, along with his wife Jameela, is very active in ALS advocacy. They celebrated their eighth wedding anniversary in Washington, D.C., at The Association’s National ALS Advocacy Day and Public Policy Conference. The two also have participated in numerous other advocacy activities. Their Walk to Defeat ALS team, “Brian's Blarney Bokes,” raised more than $14,000 in 2008. The Walk to Defeat ALS is coming up again in April and as usual Brian is busy organizing for the fundraiser. This year his team is “Brian’s Blokes,” no Blarney. Or maybe there will be some Blarney this year - read the blog to find out.

About the Association: The ALS Association is the only non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

Each year, the Walk to Defeat ALSTM brings communities together in the fight against Lou Gehrig’s Disease. Though people walk for various reasons, they are united in the quest to find a cure for ALS.

About Brian’s Chapter: The South Carolina Chapter was founded in February 2006 to serve the needs of those living with Amyotrophic Lateral Sclerosis and their caregivers. The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against ALS. ALSA covers all the bases — research, patient and community services, public education, and advocacy — in providing help and hope to those facing the disease.
The ALS Association (National Office and the South Carolina Chapter) operates under a shared mission: to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.

They work together to accomplish the mission. The South Carolina Chapter focuses primarily on helping local patients and families live with ALS while the National Office focuses primarily on research and advocacy. The Chapter supports the National Office through revenue sharing and research contributions. The National Office supports the Chapters by providing up-to-date information and materials.
Their accomplishments are made possible by the generosity of others. From the smallest donation to the largest gift, donors touch the ALS community with hope for the future.

Upstate Walk: Brian's Blarney Blokes. Brian writes, “Thank you for helping us reach our fund raising goal! Together we can make a difference in the lives of those affected by Lou Gehrig’s Disease. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatment and a cure. Please consider joining our team in the Walk to Defeat ALS™ or choose a team member from the list and donate to our cause."

Why We Need Your Help: Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.

This crippling disease can strike anyone. Presently there is no known cause of the disease yet it still costs loved ones an average of $200,000 a year to provide the care ALS patients need. Help make a difference and donate or join a walk today.

Also :

To Register:

In the spirit of full disclosure Brian is the son of my first cousin, Peter. But that does not make him or his fantastic wife Jameela any less special. Please join the walk either in person or virtually. Lave a comment if you need more information and I’ll forward it.

A little blogging Maestro… “We Are the World,” written by Michael Jackson and Lionel Rithie, conducted by Quincy Jones, and recorded by a group of superstars.

Dr. Forgot

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