Joanna Ball

Founder & CEO
Joanna is a Rare Disease patient with Homocystinuria, Joanna has been fundraising since childhood when she went door to door to collect donations for March of Dimes Walk America. In 1983 Joanna's lungs were colllapsing so she had to have scoliosis surgery, which involved putting a Herington rod in her back.. Because of the surgery she missed most of the 6th grade and was home schooled for most of that year. During the surgery she had to have a major blood transfusion (7 pints of blood). This was at the height of the AIDS epidemic. She later did the AIDS walk again raising funds door to door. People were ignorant at the time and thought it was caused by homosexuals primarily. They thought you could get it just by exchange of saliva. It was a lot harder raising funds for AIDS then, but Golden Gate Park where they held it was beautiful. After moving to Oregon in 1991, Joanna started volunteering for the American Red Cross. This lasted for about 3 years when her father gave her a recommendation to go to take classes to become a CNA. She was told that she was to slow at making beds and that she wouldn't pass the test. Determined, Joanna gave up after 4 attempts, and decided to build her skills working for a local residential care facility. Whereas she never passed, the information would come in handy following a major stroke in 2005 that paralyzed her left side entirely. She was able to gain everything back and she had her father walk her around on a gate belt until she learned to walk. Joanna is now a Home Care Worker/Personal Care Attendant for the Oregon Home Care Commission, She also hosts the Rare Connection Podcast, and does cooking videos on YouTube. She is also in a clinical trial for Homocystinuria that looks promising.