Texas Children’s Hospital to hold annual Sickle Cell Education and Research Day event

On Saturday, September 17, 2022, Texas Children’s Sickle Cell and Thalassemia Program will host Sickle Cell Education and Research Day, an event that connects patients and their families to providers, experts in the field and each other.

“Sickle Cell Education and Research Day started about a decade ago, really as an effort to bring our community of patients together,” Dr. Venée Tubman, Co-Director of Texas Children’s Sickle Cell Program, said. “Over the years, the event grew in size, with 100 - 200 people in attendance, including community partners such as Gulf Coast Blood Bank and Be The Match. After not holding it for a year because of the pandemic, we made the successful move to a virtual event last year and still had over 100 attendees participate. The event will remain virtual this year, though we are eager to get back to an in-person setting.”

Dr. Tubman has been an enthusiastic supporter of Sickle Cell Education and Research Day ever since arriving at Texas Children’s Hospital. “I joined Texas Children’s with a specific interest in sickle cell disease in 2017,” she said. “As soon as I heard about the event, I started to participate and attend. I assumed the role of Co-Director of our Sickle Cell Program in January 2020 and in that capacity became one of the organizers, alongside my colleague Dr. Titilope Fasipe, who is also Co-Director of the Sickle Cell Program.”

Sickle Cell Education and Research Day will include three sessions, one of which will feature a keynote speaker. “This year’s keynote will focus on wellness,” Dr. Tubman said. “Pain is the most common and devastating manifestation of sickle cell disease, and our program champions multidisciplinary approaches to pain. We advocate for both pharmaceutical as well as non-pharmaceutical approaches, including meditation, psychotherapy, massage and acupuncture – the whole package that can contribute to pain management.”

Another session will focus on curative therapies for sickle cell disease, including both stem cell transplantation and the relatively new and exciting treatment option, gene therapy. The team also will inform patients and families of the latest research occurring both at Texas Children’s and nationally. “Some of our families really enjoy participating in research, and we want to keep them updated,” Dr. Tubman said.

The final session of the event will be a game show, a fun activity that patients and families both enjoy and from which they learn a lot!  

Additionally, the event team will provide specific content for Spanish-speaking families. “There are many community members with sickle cell disease in Houston and the state of Texas who are native Spanish speakers,” said Dr. Tubman, “and we created a parallel program for these participants last year. We are excited to be able to do the same this year.”

She went on to explain why it’s so important to hold this event. “The Sickle Cell Program at Texas Children’s Hospital is the largest in the state and one of the largest in the country, serving over 1,200 patients. Our goal is always to push the envelope in how we care for patients with sickle cell disease and what we know. We also have the responsibility to make sure our patients are the most educated and most empowered. Sickle cell disease is a challenging and severe chronic illness. No one should be alone, and there is a lot of power in our patients and families knowing that they’re not alone.”

When asked what she most wanted patients and families to take away from the Sickle Cell Education and Research Day virtual event, she said: “We hope people will come away from the day with increased knowledge, new friends and a stronger connection to us.”

LEARN MORE ABOUT THE SICKLE CELL AND THALASSEMIA PROGRAM

Sickle Cell Education and Research Day – Virtual Event

Saturday, September 17, 2022

10 a.m. – 1:30 p.m.

Registration has closed for this event

All are welcome.