Volunteer Perspective: DFW Hereditary Cancer Patient Conference
By Mary Grace Roden
Some of the conference co-chairs at the event! (L to R: Hannah Gage, Aly Badalamenti, Mary Grace Roden)
Genetic counselors from Baylor Scott & White and UT Southwestern teamed up to organize the 2024 DFW Hereditary Cancer Patient Conference! This year’s conference was held at UT Southwestern’s Harold C. Simmons Comprehensive Cancer Center on April 6th with 23 patients in attendance. The goal of this event is to provide education and support for patients and families with hereditary cancer predisposition syndromes. This year’s attendees received the latest updates on hereditary breast cancer and colon cancer, information regarding continuation of care after identification of a hereditary cancer predisposition, and a Q&A panel featuring support care team members (chaplain, art/music therapists, and dietician). Attendees also had the opportunity to participate in gene-specific breakout groups led by a genetic counselor to facilitate smaller-group discussions about their cancer risks.
I was fortunate enough to be one of the conference co-chairs for this year’s event, along with Aly Badalamenti, Nicole Cullum, Olivia Mays, and Hannah Gage. One of my passions in genetic counseling is community outreach, which was my motivation for volunteering as a co-chair. It was the perfect opportunity to get involved with our very own community of cancer genetics patients in DFW. I had never planned an in-person event like this conference, so the process seemed a bit daunting to me. In the initial planning stage, I realized very quickly that an event like this would not be possible without volunteers. From speakers, to breakout group leaders, to those who stood by the elevators and directed attendees to the conference room – all took time out of their Saturday to contribute to the success of this year’s conference. The willingness and enthusiasm of our DFW genetics community to lend a helping hand easily became my favorite part of the planning process. It made me reflect on how lucky I am to be a part of a community that is actively engaged in making a difference for our patients. Seeing our community with their volunteer spirit on full display is something I will never forget!
I asked my conference co-chairs some questions regarding their perspective on the planning process, see what they had to say below.
Aly Badalamenti
What motivated you to volunteer to help plan this year’s conference?
This was a conference I assisted with in previous years but had never helped plan before, so I was already aware of how wonderful this opportunity is to invite patients back for a bit of re-education. This is such a motivated and information-seeking patient population, and I am always thrilled to give these cancer genetics patients and their families another opportunity to have their questions answered. As management recommendations for hereditary cancer syndromes continue to evolve, this conference can really serve as a point of re-contact to keep these patients as up-to-date as possible while also introducing them to new support resources. It also serves as a great way to get these families connected to each other.
What was your favorite part of the conference planning process?
My personal favorite part was when our group of volunteers brainstormed what topics and speakers we would have for the conference. It was great to collaborate with genetic counselors from a different clinic in our city to hear about their processes and what all of our patients may need and benefit from the most. It was also just incredibly rewarding watching it all come together.
What knowledge or piece of advice would you pass along to future conference planners?
It’s easier than you’d think it would be! As a genetic counselor, you inherently have your patients’ best interest at heart and likely know what they will benefit from hearing/learning more about. Keeping that in mind can make programming pretty easy to plan. Also, don’t be afraid to rely on your community of genetic counselors if you ever have questions about planning a conference like this or need additional support.
Nicole Cullum
What motivated you to volunteer to help plan this year’s conference?
Several things! I think it can be difficult at times for patients to know how to stay up to date about their gene mutations and meet other people who have one as well, so I thought it would be a really unique experience to be a part of to help them do just that. Plus, it is always so fun to see patient faces again, make sure they have all the resources they need, and see how they have been. I also was excited about the opportunity to work with genetic counselors outside of my own organization/clinic, get to know them better, and put together a conference as a whole DFW GC community.
What was your favorite part of the conference planning process?
Definitely getting to know some of the genetic counselors who were involved at UT Southwestern better! It’s not often that the different hospital systems within the DFW area work together to put on an event, and it was really cool to see what we all brought to the table and to get to know each other a little better! Additionally, I learned about several resources offered in the area that I didn’t know about for patients who are uninsured that I am definitely going to use as a resource for some of our patients who need it.
What knowledge or piece of advice would you pass along to future conference planners?
I would say give yourself and those in the planning process plenty of time to coordinate with 3rd parties involved and keep a consistent meeting schedule! Once the conference got closer, I felt like it was essential to have quick (30 min or less) weekly meetings to give each other updates on our To Do lists and stay accountable. It really helped us stay on track and served as motivation to get everything done that we needed to before the next time we met!