SEATTLE, Jan. 31, 2006 (PRIMEZONE) -- When Bellevue resident Gina Israel Dichter was diagnosed with LAM in 1998, little was known of Lymphangioleiomyomatosis, a rare degenerative lung disease that strikes usually only women of child-bearing age. But thanks in great part to the local efforts of the Puget Sound Friends of The LAM Foundation, 2006 is full of hope. If local and national fund-raising efforts are successful, the first-ever Global LAM treatment trial will begin.
Gina, a married mother of two, is part of a small group of women in the United States and the world definitively diagnosed with LAM. It is suspected that more than 350,000 women throughout the world have LAM. About 250,000 of them, however, have been misdiagnosed, most commonly with asthma, emphysema, or bronchitis. On average, LAM patients endure for many years without a proper diagnosis, primarily because few doctors are familiar with the disease. By the time they are diagnosed, many LAM patients feel misunderstood and frustrated by the fact that there is little medical understanding of the disease or how to prevent its progression. Women with LAM struggle to make proactive choices and plans.
"This is the hope I have been waiting for, a chance to participate in a possible LAM treatment trial, maybe one here in the Northwest," Gina says.
But time is running out for many women like Gina.
Funding clinical trials
A cure depends on research and public awareness -- and that takes lots of time and money. A full-scale clinical trial with multiple sites is extraordinarily expensive, with a price tag of $2.6 million.
The LAM Foundation needs another $700,000 to get the program off the ground. So far, the Foundation has raised $1.9 million pledged from Wyeth Pharmaceuticals, Cincinnati Children's Hospital, the National Institutes of Health, and community fundraising with a large portion coming from Seattle. But corporate donors and grants are hard to find because more often than not, they don't fit the "priorities and scope of giving."
In Washington alone you'll find some of the most generous foundations in our country, like the Bill and Melinda Gates Foundation and many others that give millions of dollars in grants to organizations, but with LAM's limited resources it is hard for the Foundation to show up on their radars. Sometimes it is who you know.
Although LAM is not a cancer, LAM research has the potential to shed significant light on cancer, heart disease, diabetes, and obesity as it has already done for Tuberous Sclerosis research.
LAM: A misunderstood disease
The Lam Foundation recently was contacted by a new patient that was undergoing chemotherapy for lung cancer, and was subsequently diagnosed with LAM after learning about it through a LAM fundraising event. Gina admits that she'd almost rather have some type of cancer, at least there would be a better chance that promising treatment and drugs would be available to fight back. "The lack of medical understanding of LAM is terribly frightening to me. It keeps me up most nights. I feel like a time bomb," she said.
Gina is putting all of her hope, fundraising efforts and prayers to work after recently witnessing the deaths of seven women who lost their struggle with LAM. Within four weeks, children lost mothers, husbands lost wives, parents lost children, and friends lost friends. One fiance lost his 27-year-old bride-to-be just two weeks before their wedding.
It often seems that those who could solve the riddle of the disease care little about understanding it. Because the number of women diagnosed with LAM is so low compared to other diseases, it is difficult to find corporations and drug companies interested in financially supporting research to find a treatment. The funding for LAM research and the responsibility of generating greater public awareness fall upon those diagnosed with LAM, their families, friends, and acquaintances. "The money we raise at our auction this year on May 13, 2006 is more vital than ever to this global treatment trial and other important research going on," Gina explains.
About the LAM Foundation
The local chapter, the Puget Sound Friends of the LAM foundation have been working diligently for more than seven years. We have raised more than $1.6 million for The National LAM foundation, with more than 75 percent of that money going directly to research. We could really use an Angel donor. Just look at the amazing results our limited resources have produced. Can you imagine what progress we could be making with a gift of a few million dollars?
Thanks to the dedicated labors of LAM Foundation scientists, the encouraging results of our initial pilot study, and the long-awaited approval from the National Institutes of Health, the global SMILES Trial will hopefully begin soon! This trial will test the effectiveness of the FDA-approved drug, Rapamycin, for the treatment of LAM. The scientific basis of the trial is rock-solid. Dr. Elizabeth Henske MD, one of the Foundation's most esteemed scientists, said, "This is one of the finest examples of bench-to-bedside targeted molecular therapy that I've ever seen." Fundraising efforts are year round in the Seattle area. You can support LAM locally by participating in Family Night on Monday, February 20 at Fatburger in Issaquah. 20% of their proceeds will be donated to the Puget Sound Friends of the LAM Foundation.
To learn more about LAM and our efforts, to donate or become a corporate sponsor of an event:
Please see http://www.pugetsoundlam.org/ 425-451-1494 or http://lam.uc.edu/
The Puget Sound Friends of the LAM Foundation logo is available at: http://www.primezone.com/newsroom/prs/?pkgid=2284