Annual summit aims to raise awareness, advocacy and action surrounding painful genetic blood disorder
HOUSTON – Approximately 70 babies per year in the Greater Houston area are born with the painful genetic disorder called sickle cell disease, more than any other region of Texas. Of the estimated 100,000 Americans living with the rare condition, approximately 7,000 are Texans.
Sickle cell disease causes red blood cells to become misshapen and look like a C-shaped farm tool called a “sickle,” sticking to vessel walls and preventing the easy flow of blood and oxygen. This ultimately causes organ damage, including severe episodes of pain that can last up to a week and can result in multiple hospitalizations throughout a lifetime.
The 2020 Sickle Cell Advocacy Summit, a free virtual event open to the public on October 8, aims to bring awareness to the forefront for increased resources and funding. The annual summit brings together renowned advocates, congressional champions, disease specialists, policy makers, and other notable speakers.
“September is National Sickle Cell Awareness Month where affected individuals, their families, community organizations, and health care professionals work together to bring more attention to the disease,” said Dr. Titilope Fasipe, MD, PhD and chair of the Houston Sickle Cell Collaborative. We need more research and treatments for this devastating disease that affects so many people in our community.”
Fasipe understands on a very personal level the impact this disease has on patients and their families. She was diagnosed with sickle cell disease at just one-year-old. Her only other family member known to also have the disease died at 17. Her experiences led to her mission: she wants every child born with sickle cell disease to have hope that they can lead a long, fulfilling life.
Kennedy Cooper is one of the estimated 1,500 children in the Houston area living with the blood disorder. Every day she must make difficult decisions in order to stay healthy and prevent pain episodes that can cause other serious health problems. Kennedy has endured countless days at Texas Children’s Hospital instead of at school or hanging out with her friends. She, like other patients with sickle cell disease, need more people to care about their struggle.
The Houston Sickle Cell Collaborative is a partnership formed by the Houston Health Department (HHD) in 2016. Along with sickle cell community organizations and advocates, HHD Director Stephen Williams and his staff are devoted to bringing awareness of this genetic disease to the forefront. That’s why, together, they organized the Sickle Cell Advocacy Summit.
“We aim to increase awareness of sickle cell by understanding the challenges faced by the people impacted by the disorder, especially during the COVID-19 pandemic,” said Williams. “We will also celebrate the winds of change from legislative successes and discuss call-to-action policy goals to keep the momentum going.”
Dr. Wayne Frederick, MD, president of Howard University who suffers from sickle cell disease, will serve as the keynote speaker at this year’s virtual summit on October 8. The summit is scheduled from 8 a.m. to 3:30 p.m.
More information and registration for the 2020 Sickle Cell Advocacy Summit is available online. Participants who are impacted personally by sickle cell disease are encouraged to share their stories.