Compared to the previous one, in use for a couple decades, it’s a bit of a shock, yes – as any change can be. But as explained at the dinner by our chairman and co-founder, Gordon Gund, it’s in line with the Zeitgeist.

Over the last half a decade, retinal disease research has reached historic proportions, with clinical trials for treatments and cures either getting underway or being prepped, with Foundation support, to do so. In fact, we’ve been calling this “the era of clinical trials.”

But, in many ways, it is just the beginning of that era. Hence the new logo.

What you now see on our website and social-media pages is a reflection of where we, FFB and those awaiting treatments and cures, are – without full vision, unable to see every part of every letter in the Foundation’s name. There are, literally and figuratively, spaces that need to be filled in.

Successful clinical trials – those which lead to treatments becoming available in the marketplace – will begin to fill in those spaces:

This imaginative re-branding is the product of Leo Burnett, one of the world’s leading ad agencies, whose chairman and CEO is Tom Bernardin, a longtime supporter and National Trustee of FFB. At the dinner, Tom (pictured above) joined Gordon in unveiling the new logo, and he, as much as anyone else, has an investment in our mission; a nephew and two of his nieces have Stargardt disease.

The equation from here on in is simple. Each clinical trial can cost tens of millions of dollars. If the Foundation can raise the money, the clinical trials go forward and, eventually, treatments become available. In other words, the spaces get filled in.

The new logo says where the Foundation is and where it’s headed.

- Rich Shea

Well, the answer is simple:  When they clean a room, they move all of my “stuff” around. (Do some of you remember the George Carlin routine about all of our “stuff?”)  When I first check into a hotel room, I take time to orient myself with the layout, and then place my clothes, suitcase and toiletries in certain spots.

I come to rely upon those things being in the same place, and when they are not, it creates an unnecessary source of frustration. I also have found that putting the tag on my door helps me know that I have found the right room when I return to it.

Lastly, as great a job as my wife does keeping our home clean, we do NOT sleep on fresh sheets every night. Do you?

Let me mention just a bit about why I am here alone. Those of us who are visually impaired need to be able to do as much as we can on our own, even if that means regularly testing ourselves. I viewed the five-day VISIONS conference as one of those tests. Yes, having my wife here would have been wonderful, as she always enjoyed the VISIONS conferences she attended with me when I was strictly a volunteer.

In November of 2010, however, I became a part-time staff member, which meant that I’d be working at VISIONS. And the reality is, she can’t be with me every trip I take, partly because she works full-time herself.

She and my children always provide me with tremendous help and support, and would have done so at VISIONS 2012, but the need for me to continue to gain confidence travelling on my own could not be ignored. Those who are visually impaired need these challenges from time to time. It not only helps us increase our independence, it also gives our loved ones and caretakers a bit of respite that they so richly deserve.

So, with that in mind, I’ve continually tested myself over the past several days, going to and from my room without assistance the vast majority of the time. Beyond that, however, I have had wonderful help from Foundation staff and many of my friends here at VISIONS.

That said, it hasn’t all been easy. Yesterday ended, for instance, with a dinner during which a number of awards were presented to volunteers, trustees and board members, and I was reminded of how an otherwise wonderful evening can take a turn. This happened when the “formal” part of the evening was finished and the “party” began.

The “party” consisted of the music being turned on, for dancing, and people getting up from their chairs at their tables and moving about the room, chatting and mingling with one another. Not being able to see the faces or lips of the people I am trying to speak with, coupled with the loud music, makes me feel a bit uneasy. I know that at least some of you who have vision loss know what I’m talking about. I tried for while to tough it out, but finally gave in to the reality that I’d have to retire for the night. So I asked someone for assistance to the elevator and headed to my room.

Now, I don’t want to give the wrong impression. There were many visually impaired attendees who not only enjoyed the music, but hit the dance floor for the next couple hours. It’s just that, at this point, I’m not ready to do the same. Plus, I’m no Fred Astaire.

Without hesitation, I can tell you my experience at VISIONS 2012 was extremely rewarding, as I knew it would be. The challenges I had navigating some aspects of it I simply chalk up to another of those many tests we all face on a regular basis.

There are more to come, and I’m thankful  I’m on this journey with FFB.

- John Corneille

During the closing Saturday session on genetic testing at VISIONS 2012, those questions were answered superbly by Dr. Stephen Daiger, one of the world’s top genetic researchers for retinal diseases, and Karmen Trzupek, a genetic counselor who works with patients affected by these conditions. You’d be hard-pressed to find professionals more knowledgeable about this complex research field.

Both speakers were excited to report that the genetic testing process — which can still be challenging for patients, doctors and researchers — has made tremendous strides over the last decade. “The tests we have available today would have seemed like science fiction just 10 years ago,” said Dr. Daiger.

He noted that identifying the disease-causing gene — which can be done in roughly 50 percent of all cases — will confirm the diagnosis and help people better understand how their diseases will affect them, family members and future children. It can also help identify which emerging treatments or clinical trials are appropriate.

He said that it is “really cool” that he is now referring some of his patients to relevant clinical trials as a result of finding their culprit gene. At the same time, Dr. Daiger acknowledged that the process can sometimes be cumbersome, “but we and the Foundation are working hard to improve upon it.”

Navigating the process is where the services of someone like Karmen come in. Armed with a thorough clinical report from a doctor familiar with retinal degenerations, genetic counselors like her can help patients determine: 1) where a blood sample should be sent; 2) the chances of getting a positive result; and 3) what the result means to the individual and the family.

Both Karmen and Dr. Daiger recommended that a patient visit one of the clinical research centers supported by the Foundation, if possible, to get a clinical work-up and genetic counseling. These facilities have highly qualified doctors and counseling professionals. (For information on a center near you, call 1-800-683-5555 during regular business hours and ask for the Foundation’s information and referral department.)

If visiting one of these centers isn’t convenient, Karmen provides telephone- and web-based counseling services through the company InformedDNA. She works with patients and families to determine if testing is appropriate, which clinical center or physician should be seen and where a blood sample can be sent.

For people who were genetically tested several years ago and didn’t get a result, it is important that they follow up with the testing center or the physician who ordered the test. It may be time for their blood sample to be retested or for a new sample to be submitted. In some cases, it may make sense to start the process anew, and contacting Karmen can be a good place to start.

- Dr. Steve Rose

Pictured above: Dr. Stephen Daiger (standing, left) and Dr. Rose speak with a Foundation member after the session. 

That was one of the many messages Erik, an FFB spokesperson, delivered to a crowd of more than 500 people at VISIONS 2012 earlier today, when he wowed them with his presentation “Overcoming the ‘Obstacle’ of Blindness.”

Best known as the only blind person to summit Mount Everest, Erik is also an author, filmmaker, motivational speaker and adventurer who, among other feats, paraglides, skydives and, most recently, kayaks.

That’s right – kayaks. And he proved as much with one of the many video clips and slides he showed, even while joking about the irony of “a blind guy” using photos to tell his story.

At the core, however, of his often humorous and moving message was the idea that adversity – especially the kind that the visually impaired face – can be taken advantage of, in ways that force people to be innovative and creative.

“Alchemists,” he called those who work adversity to their advantage, “people who turn led into gold.” And he included among them FFB’s members and researchers.

Below, you’ll find video highlights from Erik’s presentation, starting with a description of his journey up Mt. Everest more than 10 years ago, with a joke about Minneapolis, site of VISIONS 2012, thrown in. And, yes, that’s Foundation co-founder and chairman Gordon Gund sitting in the front row:

Here, he recounts how he recently participated in an adventure reality show called Expedition Impossible, which was set in Morocco, where he relied heavily on his team, No Limits:

Finally, he touches on the idea of “vision,” in particular how it applies to the Foundation’s mission:

- Rich Shea

Speaking of “bad days,” I attended a session entitled “Growing Through Grief: Emotional Adjustment to Vision Loss,” conducted by Ellen Morrow, of Vision Loss Resources.  I don’t know about you, but whenever I attend a session covering this type of topic, I have this crazy notion that a “magic bullet” will be shot through the room, providing that long-sought-after solution to the emotional challenges all of us face.

As I left the session, however, I didn’t feel that shot had been fired. Instead, the session – which included stories shared by those in attendance – helped to reinforce that the “bad days” are very normal. It’s how we elect to handle them which helps shape who we are and what we will become.

As an example, I have something to share. Since beginning to lose my vision in my teens, I’ve gone through many stages of loss, dropping-off points, if you will, that remind me I have retinitis pigmentosa, and must continually deal with it. Up until about a couple months ago, I had some central vision left, through which, if you were close enough, I could make out your facial features.

Well, that vision has left me. I see shapes in front of me, so I may know you’re there. But if you aren’t speaking, I don’t know whether you’re a man or woman, and what distinguishes you – size of nose, eye color, smile – from others. I can no longer, in fact, see the faces of my wife and daughters when we sit down for dinner.

That realization, I admit, had me down for quite a while. But then I reached out to others who’d gone through similar experiences. These are people who grieved as well, then accepted the new stage, and moved on. Many work for and/or are members of the Foundation.

Which is why this year’s experience is so different from others. I hear familiar voices out there; but I don’t see their faces. But being in their company provides comfort and reassurance – in no small part because I know we’re all focused on helping the Foundation raise money for treatments and cures.

Along these lines, there were no major “incidents” yesterday while walking many corridors and going up and down escalators and elevators.  The only exception was when I got in the elevator once after leaving my hotel room for the conference area and hit the wrong button.  Instead of finding the “L” button for Lobby, I found the button that summoned the front desk!

I knew I was in trouble when, after I pushed the button, no light turned on but, rather, I heard the sound of a telephone ringing and then the voice of someone saying, “Front desk, may I help you?”  My response was something like, “I’m sorry, just another one of your visually challenged guests trying to ride the elevator alone.”

I HATE it when the elevator door opens to take me somewhere, and there is no one else on board. That dreadful silence means that I am on my own to my destination and, who knows, another chat with the front desk!?

- John Corneille