CURE – the organization that works hard to find a cure for epilepsy sufferers while supporting their plight – has helped many individuals with this disease. It is not just those afflicted with the disease who are suffering though and CURE strives to help the family and friends who need just as much support.  One individual speaks about her personal story and how CURE has helped her:

“My introduction to epilepsy didn’t come from a fall on the bathroom floor, or an inability to move or speak. It began with one terrifying phone call. I was thirteen years old, spending the summer with my dad when my aunt called. My mother, Wanda, had suffered a seizure and was in Intensive Care. Scared to death, all I wanted was to return home to be by my mom’s side. However, my father did not think it was important enough to cut short my visit with him. It was the first of many times that someone would underestimate the seriousness of my mother’s struggles. At the time of my mother’s epilepsy diagnosis, she had already been struggling with other health problems. At the age of thirty, soon after my birth, my mother had a stroke. Left permanently disabled, this was the beginning of a life-long battle including many trips to emergency rooms and much unpredictability in our lives. I never knew when I would have to call an ambulance, help my mom get to the hospital, and try to stay calm in the process.

To make matters worse, we dealt with the constant stress of our dire financial situation, in part due to the staggering cost of treating my mother’s medical problems. I silently prayed for a “normal” childhood—one with a healthy parent who didn’t require me to be a mini-adult. After learning of that first seizure and then her diagnosis of epilepsy, I had no idea what to expect. I didn’t know how my life might change. I was inundated with brochures and leaflets at the hospital describing how to cope with epilepsy. She was advised to attend a series of support group meetings at which she was repeatedly told how she could “live” with epilepsy. And my mother did live—for the next eleven years—with infrequent seizures and a daily “cocktail” of high-powered medications. However, just weeks after her fifty-third birthday, my mother suffered two major seizures. Her body never recovered, and she passed away six weeks later.

After her death, I could never quite escape the thought that maybe something could have been done to extend her life if only there had been a focus on curing her illness rather than simply relying on pills to control it. Maybe, if we hadn’t been so accepting of the diagnosis and focusing on how to “live” with it, we would not have been so tolerant of the occasional seizures and the debilitating side effects. I believe children with family members who have epilepsy are often forgotten victims of this devastating disease. There were no support groups for me—nobody to answer all the questions or address all the fears that raced through my mind. As my mother’s only child and often the person present when she was most in need, I never felt completely comfortable disclosing my fears and concerns about her illness. I also struggled with speaking to family about the cause of my mother’s death.

Though a shock to us all, her departure was in some ways considered an inevitable ending to a long battle with illness. I wrestled with the notion that my mother had been silently suffering for years—that her epilepsy caused her more grief than any of us knew. This was confirmed when I found a journal she had kept in the final year of her life. It was clear that she meekly, yet stubbornly, suffered from silent warning signs—loss of consciousness, memory loss—but worked diligently to hide them from me and from others. It broke my heart to feel that while I was away at college, embarking on my journey into adulthood, my mom was struggling all alone. When I found CURE, it released so many thoughts I had held inside for years. Why did we simply accept the status quo? Why were we OK believing that the best we could do was to live with the diagnosis of epilepsy, which included breakthrough seizures and medication side effects? Why had I never heard anyone speak about a cure, or even a “race for a cure”? Why did we settle for simply pouring medication after medication into my mother in a vain attempt to control her seizures? In my heart, I knew I had found an organization that was on the right track. We can and must work together to find a cure. My mother’s seizures should not have been treated as inevitable, just as her death should not have been viewed as inevitable. In CURE, I have found hope for all patients and family members who suffer from epilepsy. CURE is the powerful force needed to make this dream of a cure a reality.”

Connie Milstein is a supporter of the important work of this organization, today serving on its board of directors.

Kathy Roth-Douquet is chairman of the Board of Blue Star Families as well as being its founder and President.  She is an advocate for military families as well as a noted author, having enjoyed much success with her book AWOL, The Unexcused Absence of America’s Upper Classes from Military Service and How It Hurts the Country (with Frank Schaeffer, HarperCollins) which Sen. John McCain said was “a great service” to America.  In Leatherneck magazine, she was termed a “spokesperson for military families.”  On the board with Roth-Douquet as Director of Washington DC BSF, is Connie Milstein.

CURE works tirelessly to find cures for epilepsy and to raise money for research and medical options.  To this end, they are always coming up with new and creative fundraising ideas.  This month, on September 21, 2010, they will have a golf tournament at the Wentworth Hills Gold Club in Plainville, Massachusetts.

Certainly, board members of CURE like Connie Milstein work tirelessly to promote the causes and goals of CURE.  This type of fundraising event allows participants to enjoy the day, potentially win door prizes, and support a very worthy cause.

Connie Milstein is about to embark on a new building project, the Washington, D.C. branch of the New York University study-abroad program.  Ms. Milstein is directing $10 million to construct the 12-story, 75,000-square-foot center, which will join 11 other extensions of NYU which are located throughout the world.

The Washington, D.C. campus will offer a one semester study-abroad program in which students will be able to learn journalism, political science and American history just steps away from the White House, in one of the most powerful governmental cities  in the world.

Groundbreaking is due to commence in September, 2010 with the first students arriving at the campus for spring semester in 2012. Students will arrive to find a building with dormitories on the upper floors, suitable for 125 students. The rest of the building will house lecture halls and seminar rooms. Located within the walls of the new building will also be the offices of Government and Community Affairs and the Brademas Center for the Study of Congress.

Connie Milstein explains her special interest in this project:

“I used to think New York was the capital of the world, but being in D.C. will give these students a totally different view of the United States and its position in the world.  It’s an important place to teach students how the government works and the history of the U.S., not to mention opportunities for internships, which will allow them to understand the political system and get exposure to a much larger global network.”

New York University is the latest recipient of the largesse of Connie Milstein and her philanthropic activities.  Ms. Milstein is embarking on a $10 million project to expand the NYU campus to Washington D.C. by building an extension there.

The 12-story building will be the 12th additional campus for NYU which houses their extensive study-abroad program. The Washington campus will join the other satellite campuses which are located in internationally important cities such as London, Shanghai, and Tel Aviv. The Washington, D.C. program will be offering a one semester study-abroad program in journalism, political science and American history. Internships will also be offered in various government offices and non-governmental organizations.

The new building will be located on  northwest L Street, just a few blocks from the White House. Ground-breaking for the new structure is scheduled to commence in September, 2010.

For the best in dining pleasure, few restaurants compare to Plume, at the Jefferson Hotel in Washington, D.C.  Award-winning chef Damon Gordon invites guests to enjoy his outstanding culinary creations, either by sitting in a cozy nook or a table by the lovely fireplace.

Chef Damon was trained in Michelin kitchens in the U.K. and under the watchful eye of Alain Ducasse in New York City.  Plume boasts a hand-painted mural of Monticello’s south vineyard on one wall, evoking the feel of Thomas Jefferson’s enjoyment of fine wines.  With Jefferson’s background in mind, Plume includes a wine cellar with over 1200 labels, spanning a dozen nationalities and going back as far as 1780.

While dining at Plume, you’ll also be able to enjoy the newly renovated look of the Jefferson Hotel, renovated by Ogden CAP Properties with Principal and Co-Founder Connie Milstein.

CURE is constantly working to raise awareness about epilepsy and to raise money for more research and cures.  They have a number of upcoming events, intended to raise awareness and funds, and are always working tirelessly with their board members, including Connie Milstein, to develop more ideas and events.

A few of the upcoming events for this summer and beyond include: the Gordon Research Conference from August 8-13, 2010 at Colby College; the Golf Tournament Benefiting CURE on August 23, 2010 at the Wentworth Hills Golf Club in Plainville, MA; the 6^th Annual Drive for CURE on August 26, 2010 at the ThunderHawk Golf Club in Beach Park, IL; and the 3^rd Annual CURE New York City Benefit with special guest New York City Mayor Michael R. Bloomberg on October 14, 2010 at the Roosevelt Hotel in New York City.

CURE drew an amazing sold-out crowd at the Chicago Field Museum for their annual benefit on April.  More than 800 guests were in attendance with guest speaker Katie Couric, Chair Susan Axelrod and others to raise money for cutting-edge epilepsy research.

They were also joined together to celebrate a fantastic year for CURE, which raised record-breaking fundraising dollars for CURE’s research programs.  Certainly board members such as Connie Milstein, LeeAnn Brigido, Gardiner Lapham, Jeanne H. Donalty and others help to make these successes possible.

As Susamn Axelrod said, “Never before has epilepsy received attention of this magnitude. We know this has and will continue to make a huge difference for epilepsy patients and their families.”

Couric, as the keynote speaker, added her insights and experiences as a disease advocate, for the work that she has done for colon cancer awareness and research.  She commended the work that CURE has done to raise awareness and research dollars.

Connie Milstein’s parents, Seymour and Vivian, established the Seymour and Vivian Milstein Award (more commonly known as the Milstein Award) over 20 years ago. This year will mark the 22nd ceremony of its kind and will present an award for “scientific achievement in interferon and cykotine research.” Interferons and cykotines take part in all the body’s biological workings and can advance certain diseases like hepatitis, influenza, cancers, autoimmune disorders like multiple sclerosis and lupus. Interferons are so crucial that they have been referred to as “evolution’s first and perhaps most important invention for the survival of animals.” The reason research in this area is so vital is that  over 50% of all communicable diseases that affect humans are caused by viruses. Interferons should help one’s immune system “detect and thwart foreign invaders such as viruses,” which makes it all the more important that we “continue to probe the nature of interferon and other cykotines and [establish] how they are integral to a healthy immune system.” That is why the Milstein Award is so important to help the world find cures for such terribly, oft-fatal, diseases.

Many organizations use an incredible amount of creativity and thought to touch the lives of those in need. The Medical Missions for Children, founded with the help of Connie Milstein and many others, is one such organization. Their Giggles theater performs in a hospital in New Jersey three times a week to bring laughter and entertainment to sick children. Learn more about their amazing mission here.