In the spirit of Valentine’s Day with its outpouring of love, I had to write this post. My intent is not just to touch your heart strings, it’s to ask for your help.
Question: What do you do to help a friend who’s been diagnosed with a rare terminal illness and fighting the disease despite major cutbacks in its research budget?
Answer: Everything possible.
In addition to supporting emotional and financial support, I want to help publicize her special fundraising event, Bid & Bake for a Breath, and her overall cause.
Alanna Nelson (pictured holding her daughter, Sadie) is one of my former students when I taught as an adjunct instructor at Lehigh University back in the early 1990’s. We’ve been in touch over the years as she graduated, progressed in her career, got married, and started a family (beautiful Sadie) … all wonderful milestones. Now, however, Alanna is fighting for her life, and she is not alone.
Here’s Alanna’s story in her own words:
“Recently my three-year-old daughter, said to me, “Mommy, when I grow up I want to be a doctor to make you better. I cried an entire day, but after crying, I decided to act. I am a happily married woman who has been recently diagnosed with a rare terminal lung disease that affects only women. The disease is called Lymphangioleiomyomatosis, or LAM for short. It is a genetic lung disease, which destroys healthy lung tissue by causing bubble-like cysts that cannot transfer oxygen to the blood. This means that people with LAM will eventually need full-time oxygen, and finally must resort to lung transplantation to stay alive. There is currently NO CURE and LAM is ultimately fatal.
There are 1500 confirmed cases worldwide, but LAM Foundation scientists estimate that there are over 250,000 women going undiagnosed or misdiagnosed. I was misdiagnosed for seven years! I had a lung collapse in 2000, followed by the discovery of cysts on my kidneys, and in October 2006, when I had my gall bladder removed and then suffered another lung collapse, I was finally diagnosed with LAM.
LAM is cruel. It lurks silently as women begin their careers and start their families, then it slowly destroys their lungs. The progression of the disease is dramatically hastened by estrogen, so doctors advise against having children. I was lucky not to have a lung collapse while pregnant. However, my disease was probably kicked into high gear by becoming pregnant. I’ve learned that others share similar stories. Like many women, I now live with the guilt of asking the ‘what if’ question: “What if I never had a child – would I be in the same condition I am in now?” Then the guilt creeps in for having thought about such a question in the first place. My every day life is no longer the one I led previously. I now must worry about how things will affect my lungs or my ability to breathe. I can no longer fly in an airplane, ride a roller coaster, or even take a hot steamy shower without getting short of breath.
For me, and for so many other women, the only way to “live life” is to be proactive and to help raise funds to find a cure. The LAM Foundation has raised over $10 million to help to find a cure and dedicated nearly 70% of all funds raised to research alone. Most of the funding has come from private donations; very little has been through government grants. Federal funding for the National Institutes of Health was recently cut, thereby making our fundraising efforts even more crucial.
While there is no cure now, there are several drugs that might be effective, if only funding were available for more clinical trials. I am organizing a fundraiser in February 2008. All proceeds will go directly to The LAM Foundation to further the search for a cure. The LAM Foundation is a 501(C)(3) non-profit organization and all donations are tax-deductible.”
“Bid & Bake for a Breath”
Alanna and her friends have organized a wonderful family-friendly fundraiser, Bid & Bake for a Breath, to be held Sunday, Feb. 24, 2008. It will be a great event with a kids’ baking contest and silent auction with terrific items – all-in-all, a great way to beat the winter blahs this time of year while supporting a great cause.
If you’re in the area, please stop by. Regardless of where you live, I encourage you to support The LAM Foundation … for Alanna’s sake … for her family … and for the families of those affected by this disease.
(Note: If you make a donation to The LAM Foundation, please do so in Alanna Nelson’s name so she can acknowledge your contribution.)
Thank you from my heart.