Shining the Spotlight on Alliance to Cure Cavernous Malformation and Their Work to Diversify Neurology

This year’s Justworks Spring Forward Fund winner was Alliance to Cure Cavernous Malformation. As a patient organization, they work to bridge the gap between scientists and patients and foster a community that offers support and educational resources. We sat down with key members from Alliance to Cure Cavernous Malformation to talk about how the organization has made an impact within the patient community.

Q&A

What inspired you to found Alliance to Cure Cavernous Malformation? 

Connie Lee, Founder: 

I have a daughter who was diagnosed with this disease when she was four months old. She got her diagnosis the same day that she had her first brain surgery. She had a pretty severe course. When she was little, she had four brain surgeries in four years from brain hemorrhages. At that point, I had to stop working to take care of her. 

I started Alliance to Cure Cavernous Malformation because I wanted to meet other families with affected children and meet specialists who could inform me what the future of cerebral cavernous malformation (CCM) would look like. 

Part of your work includes a DEIB program called Breaking Barriers. Can you tell me how this program came to be? 

Jessica Biggs, Program Development and Outreach Specialist: 

We created Breaking Barriers out of the recognition that our patient medical databases did not reflect the numbers of diagnosed Black patients we should have been seeing. We knew CCM wasn’t less common in the Black population, and at the time, we were only seeing less than 70 patients.

The program focuses on addressing and eliminating the barriers to diagnosis so Black patients can access life-saving educational resources and make the connections they need to receive quality healthcare. We’ve developed the community support programs, and now we’re expanding the program to amplify its impact. 

Can you speak to what program expansion looks like? 

Jiea Rutland-Simpson, DEI Project Consultant: 

To really impact the African-American community, we had to reach out to doctors because those are the experts. So, we reached out to a historically Black medical school about starting a scholarship program. Justworks’ Spring Forward Fund grant has enabled us to provide scholarships for students interested in neurology, as well as stipends for students entering a rotation period.

What is the impact you hope Breaking Barriers will have through outreach to the medical community?  

Connie Lee: 

CCM is a disease where, frequently, the initial presentation is kind of fuzzy. People come in with seizures. They come in with mysterious headaches or neurological deficits, and it takes a physician who is caring and concerned enough to escalate that to get someone an MRI. A patient needs to be given the benefit of the doubt that their symptoms are important and worth following up on. That's what we're hoping to get out of Breaking Barriers through outreach with physicians. 

Kandance, as a Black patient diagnosed with CCM, can you share your experience? 

Kandance Weems Norris, Board Member: 

I was at the hospital because I thought I was having another brain hemorrhage and told them that. The neurologist in the ER prescribed an anti-seizure medication for me, which is a controlled substance. But, the neurologist from the Neurology Unit decided he was not going to give me that medication because it’s potentially addictive. He decided I just needed anti-anxiety medication even though I was in pain and begging for the medication. After that, I ended up having a grand mal seizure.

We need to have doctors who won’t assume that if the patient is Black, they are using drugs, or drunk, or mentally ill, and that's what's causing the symptoms. You need people to advocate for diverse patients, and there are currently not a lot of people who would do that. Our goal is to increase those numbers.

Jiea Rutland-Simpson: 

Everyone deserves to have equal care. It shouldn't matter what people look like or what language they speak. They should all be taken seriously. That’s why we’re focusing on outreach and diversification within the medical community, more specifically, the field of neurology.

To read more about Alliance to Cure Cavernous Malformation and Justworks’ Spring Forward Fund grant, head over to their website.