On September 8th I came across a tweet from Paria Hassouri that gives new meaning to the word, social. I’ve shared it in previous posts, but it’s worth retweeting here:
“@EJordanCarr @RWZelle, please read about the #slaysarcoma5K and consider featuring on Zelle…let’s bring awareness! slaysarcoma.com”
What’s so social about this tweet? It resulted in a juggernaut of action. The intent of the tweet was to bring awareness to Amy Reed’s story and the Slay Sarcoma 5K Run & Walk. As a result of this tweet and ongoing social efforts, a team of 120 people, all mostly strangers, came together as virtual runners on October 17 in support of this important race. I rallied nearly 20 of my friends to join me; our locations spanned several states—and through Paria’s efforts, she brought together even more participants from across the country.
Of the 120 Sarcoma Slayers on Paria’s team, she only knew 40 of them. Everyone else came together as a result of social collaboration—sharing Amy’s story online and friends telling friends about the race. Now that’s social magic—strangers coming together to support an important cause.
I caught up with Paria to learn more about her race experience and her friend, Amy. Her interview reminds me of a quote by Helen Keller: “Alone we can do so little; together we can do so much.”
How did your team come together and how much was raised?
My team came together in a variety of ways—it included friends and families, as well as people who found out about the race from my blog and online efforts. It all started with a post I wrote about my friend, Amy Reed, who has stage 4 cancer as a result of a procedure that used a morcellator. To bring additional awareness to her story, I offered to pay for anyone’s race registration as long as they would share Amy’s story. People responded. My offer received increased attention as I wrote an article for Women’s Running and was featured on a podcast with Amanda Loudin (@MissZippy1).
I had 120 people on my team and paid for 103 of the race registrations, which came to over $3,100; however, much more was raised, as some people on my team paid their own registrations and made additional donations. I’m incredibly proud of my team and what we accomplished together.
How much was raised overall for the Slay Sarcoma 5K Run & Walk?
There were over 600 participants—about 300 were in person in Yardley and the rest were virtual runners and walkers across the U.S. (and a few international participants). Early results indicate that Sarcoma Slayers raised an impressive $70,000 (includes those who didn’t race but made direct donations instead). Proceeds benefit the University of Pennsylvania Abramson Cancer Center’s Slay Sarcoma Research Fund.
Can you share a special moment from the race?
There were many, but this one stands out for me. During our drive to Santa Monica for the run, my husband and I were talking to our kids (ages 14, 11, 9) about the run. They had known for at least a month that we were doing it, but didn’t really know the details about it; maybe they just assumed it was another one of their mom’s running events. We shared more detail about Amy, the morcellator, and how no one knows how much longer Amy has, as her cancer has come back and spread to her spine and lungs. My 9-year-old daughter got very upset and said, “I wish you hadn’t told me; now I’m sad.” She got tearful in the car. I told her that we told them because it’s important for them to know why we were doing the run. My daughter does not enjoy running, but during the 5K, she really gave it her all and said, “I’m glad I’m running because I feel like I may be helping save someone’s life.”
Is there an update on Amy’s fight to ban the morcellator?
While the FDA has issued a warning that the morcellator may be associated with the spread of hidden cancers, they have not banned its use. Amy’s husband, Hooman, will not stop fighting this battle, no matter how long it takes. You can keep updated on their progress by visiting their Change.org petition.
Interestingly, one of the women who participated in the race shared that her boss is scheduled to have fibroid surgery and her doctor plans to use the morcellator. She said that her boss’ doctor told her that in trying to decide which type of procedure to not go to the Internet because the information would scare her and that it doesn’t really happen. A Sarcoma Slayer who was with us said “No, it does happen. I know someone who it happened to.” I don’t think that her boss has decided yet, but at least she will be making an informed decision.
Amy did not have a chance to make an informed decision. No doctor ever told her that there is a chance her fibroid contains cancer and that it may be spread by using a morcellator (although there were already cases of women coming forward and the risk was known).
Amy and Hooman have never tried to sue the doctor, hospital, or the company that made the morcellator. They have just spent their time and money on getting the morcellator banned to protect others. The largest manufacturer of the morcellator, Johnson & Johnson, did recall its morcellators and have taken them off the market within the last year after the FDA warning, but other companies that make the morcellator haven’t, including the company that made the one that was used on Amy.
Anything else that you’d like to share?
A pediatrician friend of mine who has a practice close to Yardley participated in the race. She briefly met with Amy and said the most emotional moment was watching her and Hooman and their six kids cross the finish line together. There were placards along the course of women who recently lost their lives to Leiomyosarcoma (LMS). She said Amy was excited about the number of people on my team participating across the U.S. as virtual runners, and that I played a big role in raising awareness. It really makes me want to use what little voice I have to continue to give back. I started my blog to chronicle my one-year journey to running my first full marathon, and it’s been fairly time consuming for me, but what I’ve accomplished with Slay Sarcoma has been absolutely more than worth my time investment.
Amy and Hooman keep saying that my husband and I are “superstars.” We are neither of those—what we have done is so little compared to them—they are the amazing couple, the superstars who are doing everything they can to minimize the chance of this happening to another woman.
I’m incredibly honored that I was a part of Paria’s team and helped bring awareness to Amy’s story and the dangers of the morecellator—and made a new friend in the process. Hear more from Paria and see additional race pictures in her wonderful race recap.
And a big thank you to my friends and family who joined me for this important race.