July 21, 2006

ALS patient explores world
through art

MGH patient Fred Siwak has seen more of the world than most people, and he has an impressive stack of photographs to prove it. His snapshots include world landmarks such as the Taj Mahal in India and the pyramids of Egypt to one of the most remote locations on Earth, the South Pole. While remarkable in its own right, Siwak's photo collection is even more astounding given another reason: he has "seen" all of these places without ever having left his home.


Merit Cudkowicz, MD, of MGH Neurology, left, and Siwak

In 1998, Siwak was diagnosed with the degenerative muscle condition amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease. ALS affects the nerve cells in the brain and spinal cord, leading to muscle weakness and atrophy.
Confined to a wheelchair, Siwak is almost completely paralyzed and uses a BiPAP — a machine that pumps air into his lungs — because he has only 20 percent of normal breathing strength.

Siwak's round-the-world exploration began during the early stages of his disease, when, with the help of his computer, he occupied his free time by creating linoleum block prints of butterflies, birds and other images. After discovering a friend would be traveling to India, Siwak thought, "it would be neat if he would take a piece of my artwork there and bring back a photo of it." Other friends and acquaintances soon started doing the same when they traveled, and he decided to have a photo of his art taken in every country in the world as a way of bringing attention to ALS. He named his project World Art for ALS Awareness.

Siwak searches for people to help with the project through the Internet, e-mailing his artwork for the photos to new recruits. "I think it would be a great accomplishment to get a photo of my art in every country in the world," says Siwak. "I like the idea of getting my art 'out there,' making a statement, a connection, knowing that my disease will surely shorten my life."


Samples of Siwak's photo collection

There are 194 countries recognized by the World Art project, and the following ones are still needed: Andorra, Angola, Antigua and Barbuda, Barbados, Burundi, Cameroon, Central African Republic, Comoros, Democratic Republic of the Congo, Dominica, Equatorial Guinea, Gabon, Ghana, Grenada, Vatican City, Federated States of Micronesia, Nauru, Palau, Sao Tome and Principe, Sudan, Suriname and Taiwan. Members of the MGH community who are traveling to any of these countries and are interested in helping Siwak with his project can contact him at seaweed@gis.net.

To learn more about ALS treatment at the MGH, see story "Care across the continuum: Multidisciplinary clinic serves ALS patients."