Jensen’s Story

When I was 13, I started having severe migraines and blurry vision. After an MRI they stated I had a venous angioma, that probably wasn’t what was causing the issues. My doctor basically said there was nothing she could do. Three years later, while in class, I had blurry vision again. I did not think…

posted on September 20, 2020
read more

Patti’s Story

I too am a cavernous malformation survivor. I was 43 years old, on New Years Eve 2007. I started the day feeling sick and dizzy. By that afternoon I could not stand, talk, walk or visually focus on anything. I had severe headaches for several years but I attributed them to my hectic work schedule…

posted on September 13, 2020
read more

Katelyn’s Story

I can definitely say my life has not been the same since the evening of March 1st, 2020 when I was sitting in my college dining hall with my two best friends and I began to see flashes in my eyes and my legs went completely numb. My gut instinct knew something was wrong so…

posted on August 23, 2020
read more

Sharon’s Story

Sharon’s inspirational story of life beyond cavernous malformations: On Friday, Dec 5th, 2014 at the age of 42, I came home from work and as I sat on the couch I noticed a funny feeling in my back. By Sunday night I was in pain like I had never felt. I could not sleep and…

posted on January 26, 2020
read more

Deb’s Story

Deb’s inspiring story of turning her struggles into an award-winning book: In Fall 2006, when I was 46, I was diagnosed with multiple cavernous angiomas—I’d experienced fleeting symptoms (dizziness, vertigo, loss of balance, numbness and tingling in my left arm) which only lasted a couple of days. Apparently, two of the angiomas had bled. A…

posted on January 26, 2020
read more

Jordan’s Story

Jordan’s story of strength and hope: In 2006, during my 2nd year of college I was diagnosed with epilepsy. It started out as absence seizures, daydreams. Once I knew what was going on it all made sense. How all those years prior in classes I’d miss out on key info. Likely the cause of the…

posted on January 26, 2020
read more

Heather Gross

Here’s Heather’s Inspiring Story: When I was a 22-year-old college student, I had a random brain hemorrhage caused by a Cavernous Angioma on my right Thalamus. There was no known treatment and the only cure was brain surgery but my lesion was too deep in my brain to reach safely so the doctors told me…

posted on June 16, 2019
read more

Tamela

I am Tamela Wagner, also known as Tamela Blessed Art. A creator of hope and happiness! My life changed in the blink of an eye when I was diagnosed in 2011 at age 44 with a rare brain disease called Cavernous Angioma. In 2012 I had brainstem surgery that many surgeons told me would be…

posted on April 19, 2019
read more

Erin

My name is Erin and I am a cavernous malformation survivor. In 2013 [during] my senior year of college…I drove seven hours home for spring break. That Monday, not even 3 days home, I got very sick… All of a sudden it felt like spiders were on my back and [my parents] called 911. [In the…

posted on April 19, 2019
read more

The role of Adamts in Cerebral Cavernous Malformation (CCM) disease

In the project above, I planned to test whether genetically and pharmacologically inhibiting Adamts in CCM disease can be utilised as a therapeutic target for Cerebral Cavernous Malformations (CCMs). Since I received the grant, I have identified an FDA approved drug, Ponatinib, which can effectively target MEKK3-KLF-ADAMTS pathway to prevent CCM formation and growth in…

posted on April 15, 2019
read more