SYRACUSE, N.Y. (WSYR-TV) — When Connie Lee’s daughter was just four months old, she had her first brain hemorrhage and surgery, and then subsequently, she had another hemorrhage and brain surgery every year for the next four years.
“After the third one I was trying to find the patient organization and it didn’t exist,” said Lee.
Her daughter has Cerebral Cavernous Angiomas, an illness that causes blood vessels to form in the brain or spinal cord and hemorrhage.
When Lee couldn’t find an organization to bring patients of the rare disease together, she took it upon herself and formed the Angioma Alliance. The patient research foundation’s mission is to inform, support, and mobilize patients to participate and drive research for better treatments and a cure to the disease.
Just a few months after launching the initial website for patients and families to connect, she received an email from a father in Indonesia who had two daughters affected by the disease, both in the hospital with brain hemorrhages. And now the organization she started in 2002 has spawned into 21 international patient organizations.
Closer to home, Shelley Stevens, of Syracuse, felt lost when one of her family members was diagnosed with Cerebral Cavernous Angioma.
“When we got the diagnosis we had no idea what this was and even though we have people in the family with backgrounds in science and human health we didn’t know what it was or how to take care of people with this condition,” she said. “So I searched on Facebook and found Angioma Alliance.”
Stevens said she was immediately welcomed into this family of other people who’ve had parents, children, siblings, all who have been diagnosed with this disease, all there to support each other.
Since joining the Facebook group, Stevens has been volunteering with the Angioma Alliance and on August 29 the group will celebrate Together For a Cure Day, a national day to improve recognition of the disease and awareness and fundraise.
With such a special connection to the group, Stevens decided to set up a fundraiser of her own.
“I, especially during covid, got a little carried away with house plants,” she said. So she opted for a plant sale. “I have a huge collection of wonderful donated plants and proceeds go to the Angioma Alliance.”
Some plants were donated by members of the Facebook group Syracuse Plant Swap and Sales, and others are some of Stevens’ own.
The plant sale is Saturday, August 7 from 8 a.m. to 5 p.m. at 807 Salt Springs Rd in Syracuse. Some of the sale’s merchandise is pictured below.
Lee’s daughter, now 22, hasn’t had a hemorrhage since she was nine, but she has 70 or more of the lesions in her brain. Thanks to people like Stevens and their support of the Angioma Alliance, the organization is working toward non-invasive treatment options as a substitute for surgery.