Of the first dozen times or so that I ever saw Joel, my then future brother in law, I think we were in a restaurant a good four or five times. This was probably just a chance event, but there were a number of dinners and one lunch with the family that Joel and Alyssa (Amanda’s sister) attended. And I noticed something. Joel and Alyssa seemed to be very keen on the idea of consulting over what to eat. Many couples do this, including Amanda and me. For example, if there are two items on the menu that I know I’d be happy with, and Amanda is pretty sure about one but not the other yet wants to try it, we’ll get those two, with the idea that we can either share them or switch them later. So for all these visits to the restaurants, I had assumed Joel and Alyssa were making some sort of similar arrangement, and it was kind of cute.
After several weeks I learned that Alyssa was actually reading the menu to Joel because he was blind. I had no idea.
Joel has a form of macular degeneration. About 10 million people have retinitis pigmentosa, macular degeneration, Usher syndrome or some other form of retinal degenerative disease. One might spend a very long time unable to see well enough to drive or read regular text. Joel is a banker and investment analyst, and recently completed an advanced degree at the Carlson School of Management, so of course he reads a lot, but does so with assistive technology not generally available with restaurant menus. Depending on one’s particular form of retinal disease, the blindness may progress or not, or if it progresses, it may do so more or less quickly or more or less to a state of total blindness.
One of the frustrating and annoying things about this category of disease is that it is on the short list of “probably curable with stem cell technology.” Maybe not all forms of retinal disease can be cured with stem cell implantation or therapy, but it makes sense that many can. This is because the highly specialized cells that make up this part of the visual system were already there, but have subsequently broken, fallen away, or otherwise stopped working. Stem cells can be thought of as undifferentiated parts that learn what to “be” when they “grow up” by context. It would be like putting an undifferentiated piece of substance in a place where your car’s engine is broken, and the substance feels around and realizes it is where, say, a head gasket is supposed to be, so it becomes a head gasket. Since a person with a retinal degenerative disease had or has all the parts, stem cells can find their way to where they are supposed to be, and develop in to the appropriate bits and pieces to restore vision.
This is annoying and frustrating because stem cell research was essentially halted for years by a lack of respect for separation of church and state. Had that not happened, people who are now in their 20s or 30s would not have to wait until they were 50 for a cure. We would be there already.
This has been done experimentally with good results. There is significant hope that these diseases, or at least a subset of them, can be cured or at least very effectively treated. (We won’t argue here about what “cure” means; we are speaking of a complex of diseases and disorders so that would not be productive.)
I’m planning to write up some peer reviewed research on stem cells and retinal disease at a later time, but for now I’d like to tell you about something more immediate that you should get involved in if you happen to live in the Twin Cities.
There is an event that is run by a group called “Foundation Fighting Blindness” in which people get together and have a nice dinner in a restaurant. I assume there is a speaker or two, and they probably have the chef come out and talk about the food, and so on and so forth. I’m pretty sure it is a well designed multi-course dinner well paired with appropriate liquid refreshments.
But there is a catch. You have to, well, eat blind. You are fitted with blindfolds, or they turn the lights off, or otherwise make it impossible for you to see. I’m sure this is very funny in a lot of ways, because people who have regular run of the mill vision are pretty hopeless when they can’t see. I’m reminded of training I did in Africa to find my way around in the dark, in order to be able to survive those not too infrequent situations when that occurs. (Did you know the rain forest floor glows at night?) I’m also reminded of that old story about the blind golfer … he had won a tournament and Arnold Palmer was giving him his trophy. Palmer said “I’d love to golf with you any time” and the golfer said he’d be happy to, and why not make it a bet? “The winner gives ten thousand dollars to the Blind Golfer Foundation,” he suggested. Feeling rather safe about that particular wager, Palmer instantly agreed and said “OK, when and where?”
“At this golf course, next Tuesday. At midnight.”
(Feel free to challenge the veracity of that story or to provide corrections.)
The point is this, for a mere few bucks, you can do three things: 1) Have a nice meal; 2) Have a unique experience; and 3) Donate some money to a cause where research is actually hopeful! (And let us hope Santorum does not become the President, because that would end further stem cell research on day one.)
Please consider going.
The details are as follows:
Inaugural Twin Cities Dining in the Dark Offers Glimpse into the
Lives of the Blind to Support Sight-Saving Research
Mayo Clinic Professor and Insurance Industry Leader To Be Recognized with Visionary Awards
Minneapolis, MN (February 22, 2012) — The Foundation Fighting Blindness, a national nonprofit focused on sight-saving research, will open guests’ eyes to the challenges of the visually impaired community at its inaugural Twin Cities Dining in the Dark on Wednesday, May 23, at the Marquette Hotel. The Foundation’s Visionary Award will be presented to Raymond Iezzi, M.D., M.S., associate professor of ophthalmology, Mayo Clinic; and Matt Clysdale, president, Maguire Agency, to recognize their accomplishments and dedication to the fight against blindness.
Dining in the Dark is a distinctive sensory awareness experience in which guests participate in an unforgettable dining adventure, in complete darkness. To get a glimpse into the lives of the blind, diners will wear special light-blocking blindfolds and enjoy their entrÃ©e using only their heightened senses of smell, sound, taste and touch. The unique event will benefit cutting-edge research into preventions, treatments and cures for vision-robbing retinal degenerative diseases like macular degeneration, retinitis pigmentosa (RP), Usher syndrome, and related conditions.
Chairing the event are Julie Anderson, of Maple Grove, MN, and Mark Valenziano, of Minneapolis, MN, who are both affected with retinal disease and have passionately supported the Foundation’s mission for years as chapter and VisionWalk leaders in the Twin Cities area. “We’re so thrilled to bring this impactful Dining in the Dark experience to Minneapolis,” Anderson says. “Not only will the evening raise valuable awareness about the challenges more than 10 million Americans, including myself, face on a daily basis, but we’re fortunate to recognize two visionaries as we generate critical funds for research.”
Visionary Award Honoree and Mayo Clinic Associate Professor of Ophthalmology Dr. Raymond Iezzi, of Rochester, MN, specializes in retinal and vitreous diseases of the eye. The Foundation has funded his research in the past, and Dr. Iezzi has lent his expertise as a speaker at local Foundation chapter meetings. Also being recognized with the Visionary Award is Maguire Agency President Matt Clysdale, of Rosedale, MN, who has over 20 years of insurance and management experience. His admirable example of accommodating a visually impaired employee to allow her to continue working demonstrates his commitment to inclusion in the workplace. He’s also been honored with a Business Journal 40 under Forty award, and was named Agent of the Year in 2007 by the Minnesota Independent Insurance Agents and Brokers.
Twin Cities Dining in the Dark, Benefiting the Foundation Fighting Blindness
Wednesday, May 23, 2012
Reception at 6 PM
Dinner and Awards at 7 to 9 PM
The Marquette Hotel
710 Marquette Ave.
Minneapolis, MN 55402
Individual tickets are available for $250 each and sponsorship packages begin at $2,500. For ticket and sponsorship information, contact Events Manager Michele DiVincenzo at MDiVincenzo@FightBlindness.org or (847) 680-0100. To RSVP as a member of the media or to coordinate an interview with an event spokesperson, contact Allie Gebhardt at (410) 423-0643 or AGebhardt@FightBlindness.org.
About Foundation Fighting Blindness
The Foundation Fighting Blindness is a national nonprofit driving research that will lead to preventions, treatments and cures for retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases that affect more 10 million Americans. In its 40-year history, the Foundation has raised more than $450 million as the leading non-governmental funder of retinal research. Breakthrough Foundation-funded studies using gene therapy have restored significant vision in children and young adults who were previously blind, paving the way for using this method to treat a wide variety of retinal degenerative diseases, and proving a cure is in sight. With a network of nearly 50 chapters, the Foundation also provides support and resources to affected individuals and their families in communities across the country.