If there is a single lesson our superficial siderosis community should be annoyingly familiar with, forward progress never happens overnight. We always seem to be waiting -appointments, test results, news. Whoever decided patience is a virtue should step forward and explain themselves.
A few weeks ago we introduced the Superficial Siderosis Research Tissue project. While progress has been slow the new project addition on the patient registry should be complete soon. The participant information consent, enrollment questionnaire, and tissue donation consent forms have been checked and uploaded.
I need to ask for a little help with our next section. What questions would you like listed with answers and made available as part of the FAQ? By creating the FAQ section using your input, we can provide you with real-world answers about the research tissue project. If you’re curious, then someone else is too. Send them to email@example.com, pop on over to our Facebook page, or tag Gary or myself with your question in one of the superficial siderosis groups.
Kyle Dempsey has been working on the financial side of the project. We have a soft estimate of June for a donation section to open up and go live. A nice bit of news from our Washington DC trip- Kyle attended the 2019 Rare Disease Week on Capitol Hill representing both superficial siderosis and his state of Wisconsin. The Rare Disease Legislative Advocacy group announced this week his Wisconsin Congressman Ron Kind has now joined the Bipartisan Rare Disease Caucus. Another voice on Capitol Hill in our corner!
I touched on the vision problems superficial siderosis brings in When Your Eyes Have A Mind Of Their Own. Gary continues to have a big problem with phantom objects; the out-of-control eye bouncing nystagmus brings and worsening double vision. Here’s hoping a visit to the ophthalmologist will offer a new solution — more updates on our ophthalmology appointment coming in a few weeks.
We’re STILL waiting to hear back from the neurosurgeon on when they plan to attempt a repair on the psuedomeningocele located on Gary’s neck. The psuedomeningocele formed when they removed a tumor from the C2/C3 area of his spine back in the ’90s. His neurosurgeon suspects this is the bleed source. I know -patience is a virtue.
Just once I’d like “Hurry the heck up” to be a virtue.