Recently Prof. Steven Greenberg connected us to Karen Gunderson. She was made aware of a genetic form of CAA in her family (different from HCHWA-D) a few years ago and decided to start a foundation.
Karen: “Hi Everyone! I live in the United States and I started a foundation called CAAcure in 2018. My mission is to find a cure for CAA and its complications through the support of research by connecting patients, caregivers, medical professionals and researchers. I was introduced to Sanne van Rijn by Dr. Steven Greenberg, one of the leading international CAA experts located in Boston, Massachusetts, United States.
I have a background in medicine and pharmacy so I’m encouraged to see other groups raise awareness through advocacy, fundraising and pushing for clinical trials for treatments and a cure. There are genetic mutations that cause CAA and my hope is to also bring awareness to genetic testing so we can find targeted treatments that will help all CAA patients, even if a mutation hasn’t been identified (yet). You can learn more on my website www.CAAcure.com or follow me on instagram and Twitter @CAAcure or on facebook under the page CAAcure.”
We are looking forward to joining our efforts in our battle against (hereditary) CAA whenever possible.