At the age of 80, Dick Coulson (featured earlier this year in The New York Times) resides in Lakewood, Colorado, where he gets around with a white cane and engages in his favorite pastime, photography. Twenty-five years ago, during a routine eye exam, the doctor noticed yellow spots, otherwise known as drusen, on Dick’s retina, an early sign of AMD. Over the next 15 years, Dick’s sight got progressively worse, forcing him to give up driving and his orthodontic practice. He’s now legally blind.

Dick’s not a complainer. He’s still an active photographer, using a digital camera to shoot, then a magnifier on his computer screen to select images. And he loves to travel, even if that means asking strangers to help him find the gates for flights. Like most Foundation Fighting Blindness members, Dick also keeps up with the latest research for treatments for AMD and other retinal diseases.

As the Foundation’s CEO, Bill Schmidt, pointed out in his blog post listing the top 12 retinal-research advancements of 2012, StemCells, Inc., launched a clinical trial – one that involves human participants – for a treatment of AMD this past summer. In addition, two participants in another stem-cell-related clinical trial, this one conducted by Advanced Cell Technology (ACT), demonstrated improved vision this past year. One has AMD, the other a juvenile form called Stargardt disease.

Stem-cell-based therapies – including those derived from a patient’s blood or skin – are among the many cutting-edge approaches to treatments the Foundation has funded for decades. The $500 million we’ve raised thus far has been funneled into both pre-clinical and clinical research, for potential gene therapy and pharmaceutical treatments as well. Considering that 10 million Americans are affected by retinal diseases – including retinitis pigmentosa, Usher syndrome and choroideremia – we’re dedicated to funding the best researchers in the most prestigious institutions worldwide.

Which brings me back to Dick Coulson. As resourceful, energetic and optimistic as he is, he supports the Foundation’s work,  to ensure that people entering their post-retirement years – that’s you, Baby Boomers – don’t have to lose their vision to AMD. The Foundation’s “Light the Way to a Cure” fundraising campaign, which doubles every dollar donated, will help us keep the research momentum going. And that will lead to treatments and cures, sooner rather than later.

Donate to FFB’s “Light the Way to a Cure” Campaign:

With a population of about 17,000, Beaver Dam, Wisconsin, is a typical Midwestern community and, according to its website, “a thriving city and wonderful place to call home.” With attractions such as the beautiful 6,000-acre Beaver Dam Lake and the Midwest Cream Cheese Competition, who am I to argue? But most important, at least in the fight against blindness, Beaver Dam plays a big role in the search for knowledge about age-related macular degeneration (AMD).

Launched in 1987 by the University of Wisconsin-Madison, and funded by the National Eye Institute, the Beaver Dam Eye Study has been collecting prevalence, incidence, and risk factor data for age-related eye disease, including AMD, with the goal of better understanding the conditions. About 5,000 of Beaver Dam’s 6,000 citizens aged 43 through 80 were originally enrolled in the study, which has been tracking eye disease in five-year increments.

According to Dr. Ronald Klein, a University of Wisconsin physician-researcher involved in the study, Beaver Dam was selected as the site because the city’s residents had been highly reliable participants in prior studies.

One important observation from the study on AMD genetics was recently reported by Dr. Klein in the Archives of Ophthalmology. He and his colleagues determined that 80 percent of people who had high genetic risk factors did not get late AMD, the stage of the disease associated with significant vision loss, by the age of 80. In other words, genetics is ultimately not a good predictor of who will get late AMD. However, information on genetics does help researchers better understand the disease and identify targets for treatments.

Dr. Klein says that the best way to determine if you are at risk of getting late AMD is through regular visits to your eye doctor. By examining your retina, he or she can identify the deposits known as drusen, which put you at risk for late AMD and associated vision loss.

Drusen usually start appearing long before the disease is advanced. When the drusen become large, they’re associated with increased risk of progression to late disease.

The best thing you can do to minimize your AMD risk is to not smoke. Eating lots of fruits and vegetables, maintaining a healthy weight, getting exercise and protecting your eyes in bright sunlight may also help minimize AMD risk.

Does that mean you shouldn’t occasionally enjoy a piece of cake like the one pictured above form the Midwest Cream Cheese Competition? No. The operative words here are: “a piece” and “occasionally.” But that sure does look like “Dam” good cheesecake.

Pictured, above: “Checkers,” an entry in the 2011 Midwest Cream Cheese Competition.

I was heartened to just learn that researchers from the Hadassah-Hebrew Medical Center in Jerusalem are receiving a $1.33 million grant from the Israeli government to advance their development of a stem cell treatment for people with dry age-related macular degeneration (AMD Hadassah is also funded by the Foundation Fighting Blindness. We are providing the group with a three-year, $300,000 grant for development of stem cell therapies.

Helping our researchers attract additional outside funding — whether from government entities or biopharmaceutical companies — is critical to the advancement of potential treatments and cures. In fact, I estimate that for every dollar we’ve invested in lab research, we’ve attracted seven dollars from the National Eye Institute. And in recent years, gene therapy development companies such as Oxford BioMedica and Applied Genetic Technologies Corporation are investing several millions in clinically focused research that was made possible by the Foundation’s funding of earlier lab studies.

Led by Dr. Benny Reubinoff, the Hadassah group is outstanding. I met with them earlier this year during my trip to Israel, and I was particularly impressed with their expertise in moving their research into human studies. They understand the regulatory challenges and technical rigors in advancing a potential therapy out of the lab and into the clinic. I am also impressed with Hadassah’s ambition; they are affiliated with companies that are targeting conditions like Parkinson’s disease and multiple sclerosis in addition to dry AMD.

I look forward to providing future updates on Hadassah’s progress toward a clinical trial of stem cells for dry AMD. So, stay tuned.

Pictured Above:  Dr. Benny Reubinoff.

Unfortunately, these same mechanisms, if not regulated properly, can be harmful to us. It turns out that these powerful molecules are also involved in the death of retinal cells in age-related macular degeneration (AMD).

Last week, 150 retinal scientists from around the world met in Bad Goegging, Germany, for the 15^th International Symposium on Retinal Degenerations to discuss a variety of research efforts and advances, and the role of the complement system was a major topic of discussion. Many of the talks focused on how we can use natural complement control mechanisms in the body to stop the damage.

In addition, there were several discussions on how to better determine the actual genetic risk for getting AMD, and how high-risk, complement-related genes affect someone’s response to Lucentis, Avastin or Eylea, the current treatments available for wet AMD.

It was in 2005 that Foundation-funded researchers first discovered that genes associated with the complement system were linked to AMD. The game-changing breakthrough was made in conjunction with the Human Genome Project, a 13-year effort to identify all the genes in the human body.  And given the complexities of the immune system, the research community continues to work hard to figure out how to manage and tweak the complement system so it doesn’t cause vision loss.

The International Symposium also included insightful talks on the role of oxidative stress in photoreceptor death in all retinal degenerations, and the studies underway to stave it off through what are known as neuroprotective therapies. Oxidative stress occurs through normal aging and wear and tear on the body, but also when the body is fighting off illness or toxins.

For example, cigarette smoke is a major contributor to oxidative stress. Eating unhealthy food can also increase it. That’s why healthy living is important for everyone, especially for those with a retinal degeneration.

Clearly, great progress is being made in identifying targets for therapies, including using the body’s own protective systems to keep the photoreceptors alive. Science never seems to move fast enough, and that is in large part due to the complexity of the human body, including systems that regulate immunity.

But thanks to the tenacity and persistence of the international research community, and by working together through meetings like the one in Bad Goegging, we’re getting there.

Pictured above:  A retina with dry AMD. The yellow spots (called drusen) accumulate and can cause damage in AMD. 

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.