Jason Lysne-CADASIL Condition

Hello, my name is Neil Zurakowski and I am advocating for my good friend Jason Lysne who was diagnosed with a rare condition called CADASIL several years ago. CADASIL is a devastating vascular disorder of the brain which strikes young adults and leads to early dementia and is often misdiagnosed as multiple sclerosis. And unfortunately, there is no cure for CADASIL. CADASIL also causes recurring ‘mini’ strokes which can lead to severe disability. Jason had his first stroke about 10 years ago and lost some feeling in his right hand and leg. More recently, Jason has exhibited very poor memory and very poor decision making, along with signs of apathy and depression which are all symptoms of this nasty disease. Jason can no longer hold down a job and understandably applied for disability in late 2018 but was denied 9 months later. I caught wind of this in January 2020 and my wife and I helped Jason file an appeal for reconsideration. Currently, the appeal is being evaluated(which is good) but they cannot proceed further until Jason gets a neuropsychological test(He did one in 2018 but apparently they need a new one) Upon hearing this, I was able to set up a virtual exam for Jason with his Doctor at the OHSU stroke center. She is the Doctor who in 2018 diagnosed Jason having CADASIL and upon seeing him last week confirmed his mental conditions have worsened since his last visit in January. The good news is that she referred him to several NeuroPsych doctors for testing, but the bad news is that due to COVID19 restrictions he is unable to go in for the testing(cannot be done virtually) I then inquired into how long he might have to wait and was horrified to learn it could take as long as 5-6 months before he could be seen. Jason(and my wife and I) are more than frustrated that he has not received disability benefits that he should be entitled to. Jason worked his whole adult life until CADASIL prevented him from doing so at age 43. He is 45 now and has a projected 19 years left to live. He has two boys that he is unable to see due to his current living and monetary situation(staying in a cheap hotel) Due to the length of the disability evaluation, Jason has just spent the last of his savings and will soon be homeless. I am hopeful through this GoFundMe, we can raise some funds for Jason to prevent this from happening. For those of you that know Jason personally, he was hesitant at first to allow me to set up a GoFundMe page, but I told him if circumstances were reversed he would help out his friend in need and he agreed with that. I also mentioned that if there were any leftover funds once he receives his disability, he could donate them to the CADASIL foundation for research. He thought that was a great idea(knowing that his kids have a 50/50 chance of inheriting this disease) I want to thank you for your time and consideration in helping Jason out. And feel free to contact me should you have any questions. Thank you! Neil