Medical research is a monumentally expensive endeavor that demands investment from nonprofits like the Foundation Fighting Blindness as well as biotech companies and the federal government. It’s a team effort which, in the past, has resulted in a cure for polio and drugs enabling those diagnosed with AIDS to live full and productive lives. Those are just two of innumerable examples.

Not only would the “fiscal cliff” adversely impact long-term public health; it would allow the United States to fall behind other countries and lose valuable time battling diseases such as Alzheimer’s, Parkinson’s, muscular dystrophy and the many retinal degenerations the Foundation has fought, for more than four decades, to eradicate.

That’s why FFB and more than 50 other health-related nonprofits will join Research!America in its “Save Research” campaign November 12-16. Along with our partners, we will raise public awareness and lobby Congress to change its mind before the January 1st deadline.

To find out how you can aid the Foundation in this effort, check out our “We Need Cures, Not Cuts!” web page, which offers guidance on raising awareness, including through social media. I also encourage you to email President Obama and your local members of Congress directly, which you can do with help from our advocacy tool.

So, what does the “fiscal cliff” mean to those with vision-robbing retinal diseases? Worst-case scenario, the National Institutes of Health (NIH), the world’s largest biomedical research agency, and the National Eye Institute (NEI), the part of the NIH that funds vision research, would face significant cuts in funding. The NIH stands to lose up to $4 billion, the NEI $55 million, if Congress fails to act by the end of 2012.

Clearly, the stakes are high for vision research. Even if Congress does act, it is likely that a longer-term debt reduction plan will be negotiated next year that could negatively impact biomedical research funding generally.

Bill Schmidt, CEO of the Foundation Fighting Blindness

So we all need to remain vigilant in our efforts to ensure that legislators understand the importance of federal investment in research and protect it as a budget priority. The reality is that basic research is not something the private sector can, or will, invest in if public support erodes. As numerous studies have shown, this public investment also leads to the creation of jobs in our biotechnology and pharmaceutical sectors.

So I encourage you to join us and the Research!America alliance next week in engaging with your federal elected officials to ensure that biomedical research funding remains a priority in the federal budget.

If you don’t know me already, my name is April Lifriu, and I’m the reigning Mrs. World and official spokesperson for FFB. In fact, I recently got into beauty pageants for the sole purpose of raising awareness about retinal diseases, which affect more than 10 million Americans alone, including members of my family, most importantly my two children. Like me, they have retinitis pigmentosa, or RP.

The Foundation has a 41-year history, and it’s raised close to half a billion dollars for the research that will eventually get treatments and cures to those who need it. But this is the first time we’ve established a Save Your Vision Month, which, as its web page shows, gives anyone interested many opportunities to spread the word about retinal diseases and research via the Internet, especially social media.

But there’s another element to it, which is why I recently paid visits to Walmart stores in Forth Worth, Texas, and Indianapolis, Indiana. As supporters of SYVM, Walmart associates have the opportunity to volunteer their time by walking on behalf of blindness research and public education, while promoting healthy vision in their communities.

During the last two weeks of September, I visited five stores in each city to thank those associates and to put a face on the Foundation, so to speak. First, I addressed associates in their store’s break room or Vision Center, and then I greeted customers in the store. Let me tell you, these folks rolled out the red carpet for me, with cake, smiles and friendly greetings. And they listened to my story and what I had to say about FFB and the challenges those with retinal diseases face.

In Fort Worth, one woman told me that she, too, has RP and that, by chance, her daughter had been diagnosed the day before. Through tears, she told me she was so thankful that she’s not alone and that FFB is doing what it can to find a cure.

Similar moments took place during the VisionWalks in both cities. VisionWalk is FFB’s signature 5K fundraiser. I happen to be chairing the one in my hometown of Tampa, Florida, later this month. They not only raise money; they enable those affected and their families and friends to console and support each other. In Forth Worth and Indianapolis I spoke to many mothers whose situations are similar to mine.

This video, shot during my visit to Forth Worth, gives you a sense of what my Walmart and VisionWalk experiences were like:

As I told those Walmart associates attending the Fort Worth VisionWalk, I’d been so exhausted from visiting their stores the day before, I literally fell asleep in my clothes and shoes the night before. But it was a good kind of exhaustion, the kind that comes from a day spent raising awareness and recognizing people also working to further the Foundation’s cause. Now, all of us have an entire month to do that.

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

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