Greetings from Happy Valley, Nittany Lion country. If God doesn’t love Penn State, why is the sky blue and white? [Lin/Linda: FYI, blue and white are the university’s colors. Pennsylvania State University is known as Penn State University and is very highly regarded for their academics and sports programs.]
OK. ‘Nuf of the Penn State stuff. How are you? I am doing well. This is day four of a five-day conference.
I am here with four colleagues from the counseling center. We are having a good time. Doing a lot of ‘girl bonding’. We have been out for Mexican, Mongolian and Thai. Sounds extravagant but every meal I have had has not been all that much more than a Big Mac and large fries with a large drink. Four or five extra dollars is not bad for some pretty cool dining experiences. At the Mexican place he made the guacamole right at our table!
Once again, remember there are still lots of special experiences we can have with vision loss. Do you like Thai? Why not go and find out? What we remember from life, what makes us happy and gives us fresh conversation material is experience. Whom do you know who talks about his one-thousandth Big Mac? Whom do you know who listens?!?
But we are not here just to have fun….
We got three, ‘free’ books along with this training. Of course, I cannot really read them that well so I asked for the books in PDF form. They came today and I can ‘read’ them with my NaturalReader. Remember the Chafee Amendment allows for copyrighted materials to be reproduced in an alternative form for us visually impaired types. Since the conference provider had already purchased the hardcover books, they were willing to provide the PDF form for free. There are options for professional reading material for us.
So much for what I am doing, What is out there in the news?
Healio had an article outlining how this is the decade for those with inherited retinal disease. The article gave three reasons why we are in line for something big. First of all, the tools for innovations are finally in place. We have the knowledge and there are all sorts of treatment options being developed.
Remember the pricing of the gene therapy treatment we talked about? Big money returns are great motivators. Put that together with streamlined FDA approval and there are bound to be a number of companies willing to put effort into finding treatments and maybe cures.
The third reason listed was the availability of patients for the treatments. People are joining support groups and trying to find treatments for themselves. They are not anonymous and passive. They are screaming to be heard and helped.
The inherited retinal diseases the article spoke of were the rarer ones, not AMD. However, that does not mean the same scenario does not apply to us. Knowledge is building. Money can be made and I think they know where to find us!
Weird as it seems, this is the best time in history to be going blind. All sort of wonderful gains are being made. There is money to be made and drug companies are on the trails.
And now, back to the conference! One more day.
Written May 10th, 2018