We can fund the cure

On June 14, I'll celebrate the 7th anniversary of when I underwent an emergency C5-6 laminectomy at Stanford after being diagnosed with a rare vascular neurological disease called Cerebral c\Cavernous Malformations (CCM). Thankfully, Dr. Gary Gary Steinberg, nurse Joli, and others at Stanford successfully performed my surgery even though I had a seizure on the operating table. The picture of me is the day of my surgery. It was to mark the location of my surgery.

Post-recovery was the most difficult time of my life. I experienced level-10 pain and had my first panic attack. The pain made me delirious during the panic attack. It took me several weeks to be able to walk again. I could only get around in a wheelchair. I could not even shower or use the bathroom by myself so I stayed in a rehab facility. There, due to concerns of aspiration, I could only eat a thickened diet, for my first week. I had to do PT/OT but it was hard to do my exercises because of mind fog.
Later, I was told I had the genetic form of CCM, specifically the founder's mutation of CCM 2 which affects Ashkenazi Jews. This results in my having numerous CCMs throughout my brain. I must get a yearly MRI to look for hemorrhages. 3 siblings and a niece also have CCM 2. While I have been stable for 7 years, In 2023 I began having seizures due to small bleeds (not hemorrhages).

This may sound grim but now all is bad. I can walk, I can control my bowels, and I live Independently. Not everyone is as lucky. Some of my friends have had strokes. Some cannot walk and may never be able to. Others changed their family planning plans either deciding not to have kids or doing it the expensive way Still others have had several surgeries. Some people have even died. At any moment this can be me minus the family planning.

Despite all the struggle, I survived. I am a CCM warrior and advocate. I realized my childhood dream of becoming a lawyer. I celebrated with my now-late dad who was also a lawyer. I checked Japan off my bucket list I found the Alliance where he found support and a realization that my family and I are not alone. I have been welcomed with open arms. The Alliance is working to accelerate a cure other than wait-and-see or spinal and brain surgery. Until then, they have worked with doctors, researchers, and scientists to help make CCM manageable and to help ensure that life with CCM does not mean life is over. They have created centers of excellence and other places where doctors not only understand CCM but can treat it and understand more about it. Words can not do justice for what Connie Lee and Alliance have done for those of us with CCM and our family members.

One day before The Alliance to Cure's anniversary on June 15, 'll celebrate the 7th anniversary of my successful surgery on 14.

CCMs are abnormal blood vessels in the brain and spinal cord that can hemorrhage and cause stroke and seizure at any age. Brain and spinal cord surgery have been the only treatments. I am always at risk. A cure can't come soon enough. One is closer than we think.
Thank you in advance.

FYI, the Alliance is Cure has 4 stars on Charity Navigator.