Every year, Cantor honors the more than 600 employees it lost in the terrorist attacks by donating all commissions made from trades on September 11 to more than 100 charities—including, this year, the Foundation.

April closes a deal with help from a Cantor trader on Charity Day. Revenues earned from trades on September 11 were donated to various charities, including the Foundation. (Photo courtesy of Getty Images.)

This past year, I was crowned Mrs. World, and before that Mrs. America. Although I’d participated in beauty pageants in my twenties, when I was single, I re-entered the competition as a wife and mother a few years ago with two goals in mind: 1) raise awareness about retinal diseases; and 2) help the Foundation raise funds for research that will treat and, one day, cure them.

I have a mild case of retinitis pigmentosa, or RP, which limits my vision. And my two children—Brandon, 13, and Savannah, 8—are also impacted by the disease. Even with corrective lenses, they have trouble seeing at night, and their peripheral vision is affected. Earning the titles of Mrs. America and Mrs. World helped me become a spokesperson for the Foundation, which is focused on improving the lives of my children and more than 10 million other Americans affected by retinal diseases.

Charity Day—a big success, raising more than $12 million between Cantor Fitzgerald and its affiliate, BGC Partners—was the first of a string of events I’ll attend for the Foundation this fall. In particular, I’m really excited about October, because it’s been set aside by the Foundation as Save Your Vision Month.

All 31 days will be dedicated to uniting and empowering the retinal disease community, largely through social-media activity. For details, you can visit this web page, to find out how to help us educate, engage and inspire people across the nation.

April and Mrs. New York, Leah Bartos, flank actor Steve Buscemi, a fellow celebrity ambassador, at Cantor Fitzgerald.

It’s only fitting that I began the fall season with Charity Day. It was a lot of fun, and the folks at Cantor treated all of us as if we were all A-list celebrities. But as I watched the traders working hard, and donating their earnings to charities, I couldn’t help but think of the Foundation itself. Cantor has taken what was a truly tragic day and turned it into an event that will benefit the less fortunate for decades to come. It reminded me just how resilient and powerful people can be.

The same can be said for the Foundation. In 40 years, it’s raised half a billion dollars for cutting-edge research which, right now, is being tested in clinical trials for treatments around the world. A lot more work has to be done, but a revolution to save and restore vision is truly underway. With my children always in my thoughts, I can’t think of a better cause to get behind.

Pictured, top of page: Mrs. World, April Lufriu, poses with Michael J. Fox at Cantor Fitzgerald on Charity Day. Fox was there representing the Michael J. Fox Foundation. 

Now please don’t go hooking up your eyeball to an electrical socket — that would be a bad idea on several levels. And even the well-controlled clinical trial of the approach, known as transcorneal electrical stimulation, is still at an early stage. But Dr. Florian Gekeler, from the University of Tübingen, Germany, reported that early results have been encouraging so far; electrical stimulation has had a positive effect on vision for some people.

The treatment is being developed by the German company Okuvision GmbH. The company is expanding the study to get a better sense of this potential treatment’s safety and efficacy. Overall, I think Dr. Frankenstein (and Boris Karloff) would have been impressed.

All in all, it was a very exciting meeting where interesting and promising research results were presented from around the world. I salute Christina Fasser, president of Retina International and a woman affected by retinitis pigmentosa, for organizing a great meeting.

Pictured above: A transcorneal electrical stimulation device developed by Okuvision GmbH

Well, yet another such miracle cure has come to my attention over the past few days. I have been receiving inquiries about an alleged stem cell “treatment” from a “consultancy group,” MD Stem Cells, which claims to provide access to a stem cell therapy that works for a range of retinal diseases. It also claims that seven people have been successfully treated.

So what is wrong with this picture? Where do I begin? After an exhaustive search, we have been unable to find any published data on clinical research for the treatment offered by MD Stem Cells. Likewise, we have found no description in the scientific literature of how the treatment offered by MD Stem Cells could work or any evidence of its resulting in a positive effect, save for the personal testimony of the seven people who say they have seen success with the treatment (whatever that means).

Perhaps most important, there doesn’t appear to be regulatory oversight for the therapy that we can find anywhere; there’s no FDA authorization for a clinical trial, and there’s no FDA approval making it available to the public. The so-called treatment is being delivered in Europe, and we do not know if any European regulatory agency has seen this protocol.

In other words, the treatment offered by MD Stem Cells is not based on any science or clinical experience we can find published anywhere and, as such, should be avoided.

So how do you know if a treatment is legit? There should be preclinical and clinical trial data published in a peer-reviewed journal on research for the treatment. The company offering a treatment should have references to those publications on its website or mention it in its news release. And, most important, it should have documented FDA or equivalent regulatory agency oversight of its research and treatment.

Also, keep this in mind: The world of retinal degeneration research is finite. The Foundation funds many of the world’s top retinal doctors and researchers, and we have relationships with most of the companies involved in this arena. In other words, we have a broad and deep knowledge of what is happening in the world of research for retinal degenerations.  So, if you have a question about something you’ve heard about an alleged treatment, send it to info@FightBlindness.org, and we’ll get back to you with our thoughts on it.

For the record, there are only two FDA-authorized clinical studies underway of a stem cell treatment for retinal degenerative diseases. Both – one for Stargardt disease, the other for dry age-related macular degeneration – are being conducted by the company Advanced Cell Technology.

To me, that’s a significant number, especially if you extrapolate it over a lifetime (70+ years), when the cumulative cost approaches $500,000.

Interestingly, the largest portion of that $7,317, about 70 percent, was for additional outpatient services (physician and clinic visits, testing and exams, etc.). People with RP had 2.74 more outpatient visits per year than those without. While the paper didn’t specify which specialists or services accounted for the difference, many were likely for vision-related issues.

Not only is RP cause enough to see the eye doctor more frequently, but people with RP are at about three times greater risk for cataract and ocular inflammation and infection. They’re also at two times the risk for glaucoma and for ear and sensory organ disorders, which the researchers believe is often attributable to Usher syndrome (combined RP and hearing loss).

Keep in mind: This paper did not include costs for low vision resources (guide dog, cane, computer software, etc.), care giving, special education needs or any type of low vision training or rehabilitation.

So by now, you are probably saying, “Thanks, Dr. Rose, for all the good news. As if losing my vision wasn’t bad enough!”

But I think there is a silver lining to this report: If you take care of yourself, you can minimize the additional health care costs. Whether you have diabetes, heart disease, asthma, RP or any other chronic condition, practicing wellness is critical. It is a lot cheaper to take care of yourself and prevent complications than it is to just let yourself go until a problem becomes acute.

Perhaps most important, if you have RP or any other retinal degenerative disease, is to see a retinal specialist regularly to help preserve your vision as much as possible. The doctor may not have the cure just yet — we are working on that as hard as we can — but he or she can detect and treat something like glaucoma or inflammation before you do, preventing further vision loss and expense. And always get to the doctor immediately if your vision changes suddenly. Sudden vision loss is not normal with RP; it is a sign of a related complication that may be treatable.

Also, to protect your vision, make sure you wear sunglasses in bright outdoor light, and don’t smoke.

My final words of advice: Enjoy yourself. As a recent article on the Foundation’s website points out, happy healthy living can save your vision.

Now imagine that, sometime in adolescence or young adulthood, you notice you’re also having trouble with your vision. Maybe you bump into things more than you used to, or have trouble seeing in the dark. At first, you might think you just need glasses. But after a visit to the eye doctor, you discover you’re losing your vision to retinitis pigmentosa (RP).

This is often the sequence of events for people who have Usher syndrome, a genetic condition that leads to both hearing and vision loss. It’s the world’s leading cause of combined blindness and deafness, affecting as many as 400,000 people. While all retinal diseases are difficult, the one-two punch of Usher syndrome can be especially devastating. So halting and reversing its resulting vision loss is an important part of the Foundation’s mission.

That’s why I’m very excited to report that our partner Oxford BioMedica announced today the start of a clinical trial at Oregon Health & Science University for a gene therapy to treat Usher syndrome type 1B. Dr. Richard Weleber is leading the charge, and an article on the Foundation’s website provides details about the study and the condition.

Known as UshStat, the gene therapy is the first vision treatment specifically for Usher syndrome to move into a clinical, or human, trial. FFB funded years of lab research that made the study possible. I should also note that many of the RP projects and emerging treatments we fund — such as the drug TUDCA, which shows promise for preserving vision — may end up helping people with Usher syndrome.

The primary goal of the first phase of the UshStat trial is to evaluate safety, but Dr. Weleber and his team will also be looking at the treatment’s effect on vision. We’ll be sure to report initial results of the study as soon as we learn them.

People often ask me why Usher syndrome affects both hearing and vision. It all comes down to tiny tube-like structures called cilia, which work like a transport system, or conveyor belt, within retinal and inner-ear cells. Cilia move critical proteins and nutrients through the cells, a process that is necessary for their health and functioning. Usher syndrome is caused by genetic defects that ultimately lead to a breakdown in this transportation system, and, subsequently, hearing and vision are lost.

Defects in cilia-related genes are often a cause of other retinal diseases, such as RP and Leber congenital amaurosis, so they are, and will remain, an important area of research for us.