The War on ALS

--------------------------------------------------------------------------------

Hello Bobby,

I am sending this note to you in response to a recent posting you made which was a letter written by a woman named Linda. In the title, Linda mentioned it's time to begin "...the war on ALS." Well, I wanted to let you and your network of readers know there is a new organization committed to doing just that, waging a war against ALS!

Back in 2005, a young (33 yrs old) committed was diagnosed with ALS. His name was Jon "committed" Blaws. Jon had always been a determined individual, and once diagnosed, he was more determined than ever. 5 months after his diagnosis, he became the first and only ALS patient to ever complete the Blaws, Coni which consisted of a 2 mile swim, 112 miles of biking and 26 miles of running. It was Jon's determination that helped him finish the race, and give a face and a name to ALS, the disease that was surely taking his life...So Others May Live. Jon rolled across the finish line to send a message to everyone watching, and people started to notice.

In 2006, Jon returned to Kona, wheelchair bound to watch another athlete, Brian Breen, run the race on behalf of Jon and ALS patients everywhere. After watching the NBC coverage of the 2005 Ironman, and seeing Jon's story, Brian became inspired to do something to make a difference. He contacted Jon and told him of his plan, to be Jon's legs in the 2006 Ironman, because he understood Jon would not be able to run again. The War on ALS was on, Jon had rallied the troops, this time with Brian sending the message. Jon was there to meet Brian as he crossed the finish line with his "Blazeman Roll." Again the story was covered by NBC news and gained more attention from the public at large.

Since 2006, the Blazeman Foundation for ALS has been committed to rallying the multi-sport (aka: triathlete) community to raise funds to increase AWARENESS and find a cure for ALS. It always frustrated Jon that more people didn't understand the extent and cruelty of this "bulldozer" disease. Thus it is our first priority to build the awareness and educate the public on ALS.

The Blazeman lost his personal battle in 2007, but the war rages on. At this year's Ironman, Kona, the president of the Blazeman Foundation for ALS, Karen O'Riordan, rolled across the finish line in memory of the Blazeman and for ALS patients everywhere. Karen lost her grandmother and mother to the disease and has a 50% chance of getting the disease herself. She, like so many of us, was inspired by Jon to do more to make the public aware of ALS.

There are many more athletes who have also stepped up to join the war. These "Blazeman Warriors" are committed to making a difference by raising funds and rolling across the finish line ...So Others May Live. With each event we gain more warriors and we are proud to say that we will have several athletes in many prestigious races throughout the continent in 2008.

In the meantime, I am inviting you and your readers to learn more about the Blazeman and our organization by visiting our websites at www.WarOnALS.com or Jon's personal website at www.ALSWarriorPoet.com. These sites will be going through a major over-haul very soon. It is our intention to make them more user friendly, accessible, and filled with pertinent information about ALS. The War on ALS site will also be a venue for our Blazeman Warriors to connect and talk about events in their immediate area.

Please let me know how we can be of more help to you or your readers, and suggestions you might have. We are a growing organization and currently made up of all volunteers, who welcome the opportunity to hear from your readers.

Best regards,

Kimm Rombardo
Member at Large
The Blazeman Foundation for ALS
www.WarOnALS.com
Krombardo@WarOnALS.com

the young man Kimm is referring to is Jon "Blazeman" Blais and he completed the 2005 Hawaii Ironman...also knows as the 2005 Ironman World Championship- with ALS! For some reason, her post is a little messed up in the first two paragraphs.

Check this out on Jon: http://www.youtube.com/watch?v=xrEUyIiApus

ALS in the Military



Research Advisory Committee on Gulf War Veterans’ IllnessesSeptember, 2004
This is an extensive report running 152 pdf pages. The Executive Summary has these unsettling words:
In the years since the war, thousands of Gulf War veterans have been evaluated and treated by government and private physicians. But the federal research effort has not succeeded in identifying treatments that substantially improve the health of ill veterans.
Further, there are no programs in place to evaluate the effectiveness of treatments currently being used or to identify and develop treatments that may hold promise for these conditions.

Many of the veterans who served in the Gulf War were exposed to a variety of potentially toxic substances during their deployment. Among these were several neurotoxins-chemical nerve agents, pills taken to protect veterans from the deadly effects of nerve agents, and multiple types of pesticides-that belong to a single class of compounds that adversely affect the nervous system.

Finding 1; A substantial proportion of Gulf War veterans are ill with multisymptom conditions not explained by wartime stress or psychiatric illness.

Finding 2; Treatments that improve the health of veterans with Gulf War illnesses are urgently needed.

Finding 3; A growing body of research indicates that an important component of Gulf War veterans’ illnesses is neurological in character.

Finding 4; Evidence supports a probable link between exposure to neurotoxins and the development of Gulf War veterans’ illnesses.

Finding 5; Other wartime exposures may also have contributed to Gulf War veterans’ illnesses.

Finding 6; The health of Gulf veterans must be carefully monitored to determine if Gulf War service is associated with excess rates of specific diseases, disease-specific deaths, or overall mortality.

Finding 7; Important questions concerning the health of children and other family members of Gulf War veterans remain unanswered.

Finding 8; Progress in understanding Gulf War veterans’ illnesses has been hindered by lack of coordination and availability of data resources maintained by the Department of Defense and the Department of Veterans Affairs.
Finding 9; Research on Gulf War veterans’ illnesses has important implications for current and future military deployments and for homeland security.

Finding 10; Further progress in understanding and treating Gulf War veterans’ illnesses requires federal research programs that are properly focused, well-managed, and adequately funded.

Each of these findings are supported in detail with charts, data and supporting research documents that are organized by topic and by suspected causes.

http://theals.blogspot.com/