Golf tournament Sept. 9 to help pulmonary fibrosis patients
By Alycia Ambroziak, The Gazette, Montreal
West Island Gazette
When Ian Alexander was diagnosed with Idiopathic Pulmonary Fibrosis in 2008, the Lachine resident didn’t know much about the disease.
He learned fast.
In fact, Alexander is the recipient of a double lung transplant that took place Feb. 8, 2009 and, despite some ups and downs, is well enough to play golf.
And it’s a golf tournament that the non-profit foundation his family started - The Alexander Family Foundation (TAFF) – is holding on Sept. 9 at the St. Rose Golf Club in Laval, Quebec.
Time 1:28pm to 6:00pm
Golf and supper $250
Supper only $100
Info: The Alexander Family Foundation. or call 514-637-2561.
“After a lot of determination and the support from my friendsand family… I am alive and kicking today – and wanting to help othersafflicted by this mysterious disease,” Alexander said last week.
He said there is no known cure for the disease.
“In fact, U..S. figures show that as many people die from this disease as from breast cancer,” said Alexander, 53, who owns his own building consulting business.
“Tragically, IPF patients die on waiting lists here in Quebec due to our impoverished health care system,” said Alexander who ended up having his transplant at the Toronto General Hospital.
“I was told afterwards that I had about a month to live,” he said noting that he had been asthmatic all his life, and had been diagnosed a few years ago with potential Idiopathic Pulmonary Fibrosis.
“Like a lot of people, I didn’t know much about the disease,” he said, noting that Idiopathic Pulmonary Fibrosis is a lung disorder characterized by progressive scarring, robbing victims of their ability to breathe.
Alexander became quite sick while vacationing in California in May, 2007 and when he returned, underwent tests at Hopital Notre Dame - that’s when he learned he had full-blown Idiopathjc Pulmonary Fibrosis.
“Unfortunately, once the disease became active in my system it took less than a year from requiring minor amounts of oxygen to the maximum amount I could get 24 hours a day,” Alexander said. “ There were so many trips in and out of hospital for care and treatment as well as loss of weight and appetite and the ability to get around.”
Alexander was told in 2008 he would need a double lung transplant.
“…but I was also told I was number 27 on the list and only about 20 transplants are done a year at Notre Dame,” Alexander said. “I asked my doctor what I could do and he told me to start looking around.”
After a lot of work, Alexander got into the program at the Toronto General Hospital where he received his new lungs and a second shot at life.
“Because of all of this…our family started the TAFF foundation, “he said adding that he urges everone to sign an organ donor card.. “Our mandate is to help others to survive that could not normally finance the burden of transplant or a cross-border provincial operations,” he said.
“We need help to raise funds to assist these patients…”
GREAT NEWS FOR PULMONARY FIBROSIS RESEARCH IN THE U.S.
Senators Patty Murray (D-WA) and Mike Crapo (R-ID) have formally introduced the bi-partisan Senate version of the PULMONARY FIBROSIS RESEARCH ENHANCEMENT ACT (S.3703) (PFREA). The PFREA was introduced on August 4, 2010, and was referred to the Health, Education, Labor & Pensions (HELP) Committee. The PFREA authorizes $16 million to establish the first national patient registry for pulmonary fibrosis (PF), establish a national PF advisory board, and call for a national PF education and awareness plan for this deadly disease. To find out how you can help get this bill passed please visit Pulmonary Fibrosis Foundation.
During the 2010 National Pulmonary Fibrosis Awareness Week activities, to be held from September 11-18, 2010 in Washington D.C. the Pulmonary Fibrosis Foundation (PFF) will seek to raise awareness of pulmonary fibrosis with Members of Congress and their staffs, as well as local and national media.
"This is a critically important year for the patients, families, caregivers, and physicians affiliated with the PFF to actively participate in our advocacy efforts during Pulmonary Fibrosis Awareness Week", said Daniel Rose, MD, President of the PFF. "The introduction of the Pulmonary Fibrosis Research Enhancement Act (PFREA, or S. 3703) in the U.S. Senate by Senators Patty Murray (D-WA) and Mike Crapo (R-ID) is an important step towards seeking new understanding of pulmonary fibrosis and find new treatments for this severe disease by establishing the first national patient registry." Visit PFF home page
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