Help my family with RVCL-S disease

In May of this year, 2021, I was diagnosed with a rare, degenerative brain disease called RVCLS, Retinal Vascular Leukoencephalopathy with Systemic Manifestations. Unfortunately, I have lived eleven years with kidney disease and lesions in my liver, stomach, bladder and of course the kidneys, all caused by the disease. Additionally, I had my left eye removed and I am legally blind. As a result, I am currently on social security, disability and I have a veterans’ administration disability. That said, I am not able to maintain my situation, so I currently struggle to get by. Most importantly two of my three brothers have also been diagnosed, as this is a genetic disease from our mothers’ side of the family where her siblings, her mother, and grandma have all been taken before they were in their mid-50s. Currently I am involved in a clinical trial in St. Louis managed by Dr John Atkinson, an unbelievable doctor, who has practiced and helped to discover this disease.
On September 18th we will be hosting a fundraiser at 565 Live, at 565 Lincoln Avenue in Bellevue at 6pm. Mark Helbing, whose two brothers also passed away from another type of brain disease, is looking to support and help my cause. I am looking forward to the support and friendly atmosphere from my friends here in Pittsburgh. There will be raffles, tickets, and specials to support my fundraising. Live music will be all night. Food will be available and you can bring a dish or dessert to share! Come out and help raise awareness and have a great time!

  • Wendy Zdobinski 
    • $50 
    • 3 mos
  • Danny Botkins 
    • $50 
    • 4 mos
  • Deborah Mccusker 
    • $50 
    • 4 mos
  • Anonymous 
    • $100 
    • 4 mos
  • Jacquelyn Scanlon 
    • $100 
    • 4 mos
See all

Organizer

Aidan Harrison 
Organizer
Pittsburgh, PA
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