MAY 2007

Hello Readers,

I am going to step away from my typical format for the Publisher Letter, and instead of touching on the many highlights of this month’s issue—and there are many—I am asking you to permit me to talk about just one article: our Feature on The Lou Ruvo Brain Institute.

Like most of you, I have heard about Larry Ruvo of Southern Wine and Spirits of Nevada and all his generosity and philanthropic work, but when I realized he was the founder of the Keep Memory Alive Foundation and the spearhead of The Lou Ruvo Brain Institute, I found myself completely drawn to the possibilities of the article. This building is going to be a jewel for Las Vegas, and REALTORS® should know all the details.

At first the little hearsay information that I received about the Brain Institute was information based on Alzheimer’s disease, and that Larry’s father had passed on from complications of the disease, and therefore Larry was devoted to the cause.

However, during my preliminary interview with Larry I was thrilled and deeply touched to find that the Brain Institute will be combining efforts for other major brain diseases such as Parkinson’s, ALS and Huntington’s. Why would this bit of information be of interest to me? Well, it hits me personally—very personally.

My father died of complications due to Huntington’s Disease (HD) in December of 1999 after battling for the better part of 20 years. Huntington’s was always a part of our family’s lives in some shape or form, from subtle to tragic, but it was always there.

I would often describe HD by saying, “Take the worst parts of Alzheimer’s Disease and Parkinson’s Disease, wrap them up and gift them to a 40-year-old. Then give that person a life sentence of 20-plus years to live with it.” You don’t die of Huntington’s; you die of complications, which is often the case with these brain diseases. Choking (or aspirating) is one of the main causes of death for HD patients.

To give you some history, Milton Wexler was the founder of the HD Foundation which was formed in 1968. Sadly, he passed this year at the age of 98.

His daughter, Nancy Wexler, Ph.D., is a Higgins Professor of Neuropsychology in the Departments of Neurology and Psychiatry of the College of Physicians and Surgeons at Columbia University, as well as the President of the Hereditary Disease Foundation in Venezuela. Working diligently together, they came upon a miraculous discovery in 1983; they were able to find the gene marker for HD.

After our family saw the “60 Minutes” episode that chronicled this discovery, my sisters and I discussed this and how it would lead to the offering of DNA testing to see if you have the disease gene. I was always the one of us that said I would not get tested. The offspring of those with HD have a 50 percent chance of carrying the gene. If you have the gene you will certainly have HD. I lived my early adult life in denial. “Ignorance is bliss” I would say. “What I don’t know won’t hurt me.” Obviously a very self-centered view.

Then I matured and realized what an enormous impact there would be on my loved ones if I had the disease. Would I get married? Would I have children? How would I prepare for my health care? The answer became clear to me. I would not imprison a spouse with being that kind of caretaker or pass on this horrible disease to my potential children. I had to take the test!

The year of my 35th birthday I sought out a doctor in L.A. who would give me the test. Then I waited. DNA testing is not a quick process. I think I waited approximately 2 to 3 weeks. You can’t imagine what that kind of wait for such news can do to a person. I suppose you learn to pray if you had not before been a spiritual person. As for me, I prayed a lot.

I received the news by phone directly from my doctor who was so emotionally invested that she cried giving me the news that I did not have the gene. We cried together. What a relief, what a gift. What freedom I was given to live out the rest of my life. Now, what would I do with it?

So, I searched for a way to work with or around HD. Since I lived in Los Angeles, I had the opportunity to meet and spend several hours of quality time with Milton Wexler, founder of the Hereditary Disease Foundation. What an extraordinary man! I consider that meeting one of the blessings in my life. Without Milton Wexler and the extraordinary efforts of his daughter, Nancy Wexler, the momentous discovery of the gene marker would probably not have been made in my lifetime. The dedication of this family to find a cure for HD gave me a second chance at life. I most likely would not have married my fabulous husband nor born our beautiful son. At the age that I am today, I would have already been showing signs of HD if I'd had the gene. In an unfortunate twist of fate, one of my siblings has been given the life sentence.

Now, as Milton has passed away and the umbrella of The Lou Ruvo Brain Institute will envelop and research all the major brain diseases, I feel the baton has been passed to carry out the work. And with Zaven Khachaturian at the lead of this phenomenal research facility, there is more hope than ever that these diseases can be cured.

Then there is Frank Gehry. Frank Gehry honored this article, this publication and this Publisher by granting us entry to his private world of architecture and design in his Los Angles headquarters to get up close and personal with the design models and plans of the Lou Ruvo Brain Institute.

Fancy offices in Beverly Hills, mahogany furniture, excessive decorations, affected staff—not for this world-renowned architect. I was pleasantly surprised, yet somehow I knew it would be this way in his humble warehouse offices.

This unassuming yet beautiful environment was flooded with natural light and boasted casual, modest furnishings made of pressed plywood. White (gator board) models sat atop rough-edged desks, and there was an amazing sense of peace in his space. The view across the expansive field of desks was surprisingly Zen. I mention all of this only to reinforce the synchronicity that surrounds this cause. This has been a month of exploration into life’s meaning and the importance of giving back. I feel I have come full circle with HD in meeting Larry Ruvo, as well as the man behind the extraordinary LRBI architecture.

The Brain Institute model is breathtaking, with the sunshine bouncing off the top of the silver-coated gator board, which is representative of the stainless steel that will be used for the actual building. The building even seems to have a soul of its own. Although I personally am not a fan of modern art, and I am certainly not educated in the arts in any way, my humble impression of anything artistic is whether or not it moves me. I was so emotionally moved by the model of this building that it reinforced the belief that there is a deeper meaning for this project than just the amazing architecture of a Frank Gehry-designed building. It is personal to many people.

I cannot effectively express my immense gratitude to Larry Ruvo, Zaven Khachaturian, Frank Gehry and all those who work so hard on Keep Memory Alive and the Lou Ruvo Brain Institute. I hope our efforts to provide this article to the community will help.

Special thanks to Liz Wolf of Larry Ruvo’s office at Southern Wine and Spirits of Nevada; and Anna Robins, Director of Special Events, Marketing and PR of Keep Memory Alive for all their assistance. Thanks also to Amy Achorn and Brian Zamora of Frank Gehry’s office for organizing and assisting with the photo shoot.

I would also like to thank our writer Doug Shields for performing the special task of putting so much amazing information into a beautifully written article that is so intimately special, and our Editor in Chief Tiffany Pace for knowing instinctively how important this article is to me and for always knowing exactly what to do and when.

Additionally, I want to thank and say goodbye to Milton Wexler. You touched my life more than you will ever know. I look forward to having another chat in the future on the other side—save a chair for me. Thank you, Nancy Wexler for your strength, commitment and never-ending drive for the cause.

For those of you who did not know about Huntington’s Disease or would like more information, I urge you to take a few minutes and view this Web site to learn more: http://www.hdfoundation.org.

I am sending out a personal request to all to click on the link below and make a donation—no matter how small—to the Keep Memory Alive Foundation. Get involved and support the Lou Ruvo Brain Institute; it will do remarkable things for Las Vegas and our recognition worldwide.

Thank you in advance for your support and for allowing me to share my story.

Keep Memory Alive Foundation

Lee Papa,Publisher

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