In the Florida region of the United States, there are four specialty centers for myeloma (Mayo Clinic Jacksonville, Baptist Health South Florida, Moffitt Cancer Center, and Sylvester Comprehensive Cancer Center), several oncology centers treating myeloma patients, incredible support groups being hosted, and HealthTree Myeloma Coaches who support and connect with patients. All of their efforts are powerful and helpful. What then would happen if we all joined together to increase networking and further myeloma research together?
The Myeloma Crowd Community by HealthTree is proud to announce the launch of their Florida Myeloma Community Chapter, whose mission is to connect, support, and educate myeloma patients and caregivers in this state. Throughout the year, we will network with local myeloma specialists, hear about Myeloma Crowd by HealthTree resources for the myeloma community, and learn from other experts in fields such as exercise and nutrition in the area.
This Chapter will meet monthly on the fourth Tuesday of every month at 6:30 PM Eastern, starting on March 22nd. The launch will highlight a specialized analysis of the myeloma patients in the area, as well as a presentation from Myeloma Crowd by HealthTree founder Jenny Ahlstrom who will share with us the different programs and resources that our team has worked hard to make possible for the myeloma community.
In this meeting, you can meet many others in your area who are going through their own myeloma journey. Whether you are a caregiver or patient, you are welcome to join us and help build a strong Florida Myeloma Crowd Community.
Hear below from some of the HealthTree Myeloma Coaches who have worked hard to make this chapter a reality:
John Bourland, Ocala
I was initially surprised by my original MM diagnosis as I was healthy and asymptomatic. After six months of induction treatment, I was preparing for an ASCT, however, it was discovered that I had achieved a stringent complete response. I decided not to go forward with the ASCT and have remained on a maintenance treatment protocol. Recently, as I begin my third year since diagnosis, I am MRD negative and feeling great!
Early after my diagnosis, I found attending a local support group was valuable. I met others in various stages of health and felt uplifted by their support and understanding. In my coaching relationships, I can see how helpful the patient connections can be. Our local group in North Central Florida fell apart during COVID times. I want to resurrect this support locally and do what I can to make support available to anyone who feels it would be valuable to them.
Sonja Harry, Tampa
When Jeff (my husband, the myeloma patient) and I began our journey with the Multiple Myeloma beast, we were devastated due to the damage done to Jeff's body and what our future would hold. We experienced a range of emotions along this journey, from feeling overwhelmed, angry, sad, lonely, intense pain, and fright, to feelings of joy, thanksgiving, gratitude, happiness, and calm.
I wanted to get involved with the Florida Chapter because of my admiration for the patients, such as my husband, who I watched weather the storm of MM, each day, and continue fighting intensely while this mean disease tried to steal their lives. As a caregiver, while watching my husband and other patients, I received motivation and inspiration and decided that I wanted to position myself so that I could help or assist others in some small way.
Peter Rivkees, Clermont
I was diagnosed in January 2019 and had four treatment protocols before receiving a Stem Cell Transplant in August 2019. Then I had four additional treatment protocols eighteen months post-SCT and CAR-T Abecma in August 2021. The latest PET shows remission. I am very grateful to my entire support team.
As a psychotherapist and board-certified coach, I hope to offer support to my Florida-based multiple myeloma chapter in any way possible.
We can't wait to grow this Florida Myeloma Community Chapter together. See you on March 22nd!
Please note that if you can't make it live to the session, you can still register for the event to receive the recording 48 hours after the event ends.
A thank you to our sponsors without whom this would not be possible:
about the author
Audrey is the Editor for the HealthTree Foundation for Multiple Myeloma. She originally joined the HealthTree Foundation in 2020 as the Myeloma Community Program Director. While not knowing much about myeloma initially, she worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys iced chais from Dutch Bros. She also loves spending time with her supportive husband and energetic three-year-old.
More on HealthTree
ASH 2023 HealthTree 360° Blood Cancer Research Reception: Advancing Your Research Using HealthTree Data and Technology
Dec 07 / 18:00 PST