Posted on January 31, 2019 |
In August 2018, Rachel Faleide, MSN, FNP-C was diagnosed with LAM. In September 2018, she decided to share her diagnosis with friends and family by starting a Facebook fundraiser for The LAM Foundation. This is what she wrote:
“In one week, I will turn 34. I used to hate birthdays, but now I appreciate each one I have. At the end of July, I had my gallbladder removed. During my CT scan, they found suspicious nodules all over my lungs. Two weeks later, I was diagnosed with lymphangioleiomyomatosis (or LAM) at the Mayo Clinic.
LAM is a rare, cystic lung disease and that affects women. It is not a cancer or an inflammatory lung disease. It’s in a category of its own. About 3-5 in one million women currently have this disease worldwide, and there are about 2,000 women with LAM in the US. I literally had better odds of winning the ND Powerball. LAM causes progressive shortness of breath and recurrent pneumothoraces (collapsed lungs). The cysts can also spread to the kidneys and the brain called angiomyolipomas. Currently, there is no cure, and I may require oxygen or a lung transplant as the disease progresses. The current life expectancy varies with progression, but averages from 15-30 years depending on several factors. Needless to say, we panicked.
Two weeks ago, my husband and I gained hope and a better prospective on the disease. We attended the LAMposium conference in Cincinnati. We met the top doctors and scientists from around the world dedicated to helping us find better ways to manage this disease, and hopefully someday, a cure. We also met, laughed, and cried with other amazing women of all ages (some older, some younger, some doing better, and some doing worse). We learned how important fundraising is for our disease to help fund further research. I will soon be going out to the National Institutes of Health in Maryland to do my part and contribute my body to research, because if those of us with the disease don’t help solve it, no one will. No one else can.
With that being said, please feel free to help me with my birthday fundraiser for this disease.”
Rachel’s initial goal was to raise $500. In just weeks, she smashed that goal by raising over $5,000. Here, she shares the story behind her fundraising success.
What gave you the idea to start fundraising on Facebook?
Facebook allows you to donate money to a charity of your choice on your birthday. On my birthday, my diagnosis was relatively new. I knew that I would eventually need to start telling people, so I used this fundraiser to tell my extended friends and family about my diagnosis.
How did it feel to open up to your community about your diagnosis?
Initially I was very scared to tell anyone in my community. As one of the only nurse practitioners for my little community, I didn't want them to worry about me leaving or feeling deserted by another medical provider (which were already scarce). But the community's response was overwhelming! I recall posting the fundraiser and then going outside to mow my lawn. By the time I came back in, over $2,000 had been raised. Many of my patients sent cards and flowers as well as words of support. My community really rallied for me.
Did anything surprise you along the way?
Yes, I was surprised by the dollar amount that was raised. I could not believe one little post that took me 30 minutes to write had the ability to raise so much money in such a short amount of time. It was incredible! The fundraiser also raised so much awareness for the disease and the LAM community.
What advice would you give to other patients about Facebook fundraising?
I have fundraised for many projects over the years, and this was as easy as it gets. I do feel that it's a simple way to share your story and connect with others.
Why did you choose to raise money for The LAM Foundation?
I was diagnosed in August 2018. It was devastating. The hardest part was not knowing what to expect due to the rarity of this condition. In September 2018, my husband and I attended our first LAMposium. The experience completely changed our whole outlook. Suddenly, we realized that we are NOT ALONE, and people are working on research for us every day! After meeting with several other Lammies, I saw how supportive and wonderful this organization was. It felt like this incredible sorority. Raising money to help fund further research and to help my sisters will be something I continue to do for years to come.
I realize that not everyone has the time or connections to lead big external fundraisers, but Facebook fundraisers are simple things that anyone can do to help raise money for a great cause. We are a small group, but we are mighty. If we empower each other, we can accomplish anything.