*This story is a patient’s first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult with your physician (preferably an MPN specialist) before making any therapy or lifestyle change.
She prayed about it. And then she prayed some more. She prayed for courage and for an answer. And three weeks after her Essential Thrombocythemia diagnosis at thirty-one years old Jen Hawkins got the sign she needed. Jen’s uncle called her up and asked if he could raise money for a foundation of her choice in conjunction with a pickleball tournament he organized annually. “This was my sign. It was time to tell the world and do something good and bring awareness to my community. I felt excited and nervous but I knew this was something that I could turn into a positive, so we ran with it, and we ran fast.” Jen says.
Jen, a young mother of two girls and a full-time sales and marketing manager for a real estate company in the Tri-Cities, Washington, and freelance makeup artist has a little downtime in her “normal life” and now it was about to get even crazier.
After deciding she was going public with her story, Jen was on the hunt for a foundation to raise money for. She says, “All signs pointed toward the MPN Research Foundation because the website really helped me with questions and I really liked that someone with an MPN started it, and I also love the fact that research is funded and mutations were found because of the MPN Research Foundation.” (The CAL-R mutation was discovered through MPN-RF funding, directly, of Dr. Robert Kralovics’ lab. This was his 2011-2013 grant.)
After choosing the foundation, Jen’s mother-in-law decided on the name Tribe Jen for their group. As Jen says it takes a tribe, and she has the best one. Her uncle then created a crowd rise account and began to market the account in association with the pickleball tournament. Soon the crowd rise account was shared through social media and friends, family and the community began to donate to Tribe Jen. T-shirts were made for her family and close friends, and at the event, a booth was set up to educate the public on MPNs. (The MPN Research Foundation sent Jen materials to share with the community.) And Jen did just that. “It was empowering being able to talk to complete strangers about this, especially because just a month before it was a complete mystery to me.” She says.
At the end of the event, Jen shared her story in front of everyone, with her husband Seth, and their daughters Karsynn and Gracyn and Tribe Jen by her side. “As nerve-racking as it was, I felt peace and hope. This is something that I am going to turn into a positive…Tribe Jen will definitely do events in the future! We raised $3,500 in a matter of a few weeks with a week to prepare. I can only imagine what we can do with more time and planning.” She says. Jen is feeling better now that’s she’s finally diagnosed and receiving proper treatment. Her platelets went from 1.8 million in August to 740,000 as of two weeks ago. She’s aware she needs to slow down and listen to her body when she feels tired or sick, but there’s no slowing down her passion to continue to fundraise for MPN research. “In my own personal journey, I want to raise more money for the MPN Research Foundation that goes to research and is one day able to help others more in-depth.”
Feel inspired by Tribe Jen? If you’ve ever thought about organizing a fundraiser for MPN research, the foundation can help you get started. Jen Hawkins is also happy to answer any questions you might have about her experience. She can be contacted at Jenchawkins3@gmail.com.
Funding research and advancing treatment options for patients like Jen is Why We Are Here. We have big plans and exciting research projects underway but we can’t do it without you so we hope you will consider investing in the future of MPN research by clicking here and donating TODAY!