For Black Health Empowerment
Our Breaking Barriers program is born out of a need to connect Black patients who have cerebral cavernous malformations (CCM or cavernous angioma) with appropriate care, support, and research participation opportunities.
Ways We Help
Access to quality care
This program will help connect Black CCM patients to quality care. Expert CCM healthcare providers help review patient MRIs, offer surgical recommendations, clarify medical information, and provide free genetic testing. For more information about this program, please get in touch with us.
Building a Community
Coping with a CCM diagnosis can be difficult. Our Black CCM patient community provides support and care resources through our Facebook and Zoom groups.
"Hold on to your dreams of a better life and stay committed to striving to realize it."
Earl G. Graves, Sr.
Florence Griffith Joyner
Florence Griffith Joyner or Flo-Jo was diagnosed with a cavernous angioma in her brain. Sadly, on the morning of September 21st, 1998, we lost Flo-Jo to an epileptic seizure caused by the cavernous angioma. She passed away in her sleep.
Flo-Jo was only 38 years old and was survived by her husband Al Joyner and their daughter Mary. Remarkably, more than 30 years later, Joyner still holds the world record in the 100- and 200-meter events, with times of 10.49 seconds and 21.34 seconds, respectively.
Three-year-old Taylor’s parents, Elizabeth and Pasco, grew concerned when they noticed changes in their daughter’s behavior. Taylor’s walking was unsteady, her speech was impaired, and her face was drooping. MRI confirmed that Taylor had a large cavernous angioma that had hemorrhaged in the pons region of her brainstem.
Taylor’s parents faced a difficult decision. Surgically removing the cavernous angioma could result in additional deficits. However, another hemorrhage could be life-threatening. Elizabeth and Pasco obtained multiple surgical opinions and decided to move forward with surgery at a hospital on the other side of the country. Nine months after the onset of her symptoms, Taylor underwent a delicate operation.
Taylor emerged from the surgery with left-sided facial paralysis, not uncommon with trauma to the pons. She had difficulty coordinating her movements, which affected her standing and walking. Since her surgery, Taylor has undergone intensive physical rehabilitation and made great improvements in her ability to get around. Her family is researching options to bring movement back to her face.
Because she had additional cavernous angiomas, Taylor received genetic testing. Testing revealed a mutation of the CCM3 gene, leading to a more severe form of cavernous angioma illness. Taylor is the first in her family to have a CCM3 mutation.
Taylor’s parents are grateful for the positive surgical outcome, but they still worry. “Unfortunately, always in the back of mine and her daddy’s mind is the anxiety of not knowing what is going on in there,” said Elizabeth. “Is there any new activity, anything we should know about?”
Elizabeth and Pasco treasure Taylor and her resilience. “She is beautiful, smart, charming, witty, stubborn, and strong. She still amazes us every day with things she does.”