May 9, 2024
Molly McCabe was going to be an opera star, using the gift of a beautiful voice to inspire audiences around the globe. That was before lupus attacked and focused most on the organ that makes singing possible– her lungs.
So began two years of feeling sorry for herself, spending her time on her mother’s couch. Until one day, Molly realized she could be sick doing nothing or she could be sick while living her life and doing something for other people. While coping with symptoms ranging from shortness of breath to stabbing chest pain, she found a reason to get up every morning, starting her own nonprofit Molly’s Fund Fighting Lupus to fundraise for research and ensure the patient’s voice is central to any discussion about the disease. In searching for the right organization to donate to, collars, the LRA stood out as the best investment for research dollars. And in time, she became so committed to our mission that she joined our Board.
Molly believes she gave up one international stage for another – joining the LRA allows her to speak out for lupus, and to make sure that people with lupus are heard. Her goal for this Lupus Awareness Month is to encourage our lupus community to talk about lupus as much as possible, to know that every voice matters, and that there are many ways to make a difference.
How? Use your voice to:
“This month is our time to tell the rest of the world in words and actions what our life is like every day. Speaking up, whether it’s on social media, to a newspaper reporter, or just talking to your family and friends, always makes an impact.”
Friends and family need to be educated too, notes Molly. Describing having gone from a life-threatening kidney infection to feeling almost well in a matter of weeks, Molly finds the uncertainty of not knowing what each day will bring the hardest part of having lupus. “You have to cancel plans a lot. But the blessing is, you’ll find the amazing people who are there in the worst of times as well as the best of times.”
Molly also feels strongly that patients can help their doctors and researchers. “Like all of us, doctors have bad days. On those days, they need to hear your story in the back of their minds to remind them why they are working so hard.”
According to Molly, your story is your most influential tool to bring about change. She encourages meeting with or emailing your legislators any time and using your experience with lupus to show them why there is such a need for the new treatments that only federally funded lupus research can deliver. “A legislator votes on a million bills given the information they have. Hearing what lupus has done to your life makes the problem real to them, so when the issue of lupus research funding comes up, they can make an informed decision.”
Another way to use your voice is to take part in a clinical trial. Molly recalls having been in a trial and not receiving the drug that was being studied. “Someone has to get the placebo so they can compare and know if the drug is effective. But no matter which group you’re in, your experience counts – whatever you say to the research team is recorded and could be that one piece of information that makes them try something different, that could lead to a cure. When the study was over, I was among the first to receive the newly approved drug and my lupus soon went into remission for five years! So, I had just as much impact and just as much benefit as those who received the study drug during the trial.”
What first drew Molly’s attention to the Lupus Research Alliance was the Board of Directors’ commitment to cover overhead costs so 100% of donations go to lupus research programs. “When I fundraise, I know that every cent goes to research. And that means so much to everybody who trusted me with their donation.” But what has made Molly stick with the LRA is the Board and the staff. “I love the people in this organization and their passion for getting us any step closer to finding answers that may help a lupus patient down the road.”
SPECIAL MOTHER’S DAY MESSAGE
Molly also wants to use her own voice to encourage other women with lupus to pursue motherhood if that’s their dream. “Don’t let fear hold you back.” Sharing her current health struggles, Molly mentioned that right now she is struggling to pick her baby up. But she finds special times with her son that don’t put strain on her body. “You find a way to be there for them, regardless of how you’re feeling. Love comes in many forms, and children accept all of them.”
