Meet Gary VandenBergh, TV Producer/Editor and Red Rider

As I write this, I have just gotten word that the doctor who diagnosed me, Mark M. Singer, MD, passed away. My wife and I sat across the desk from Dr. Singer on a hot August day in 1983 as he confirmed the diagnosis of Type 1 diabetes. Oddly, the date I was diagnosed soon would become the date of my beautiful daughter’s birth. The sting of that moment in Dr. Singer’s office was forever vanquished the moment our beautiful Lara entered the world on August 24.

So what I think about right now are the people who have always ridden alongside me and provided the support I need to own my diabetes. Actually, I am a co-owner of diabetes. I share it with my stellar wife, Nancy; my aforementioned daughter, Lara; and my awesome son, Jesse. Diabetes is the hardest challenge of my day-to-day life, and I couldn’t do it without the support of an amazing group of people. Unfortunately, in the last few years, my team has been diminished—not just with Dr. Singer’s passing, but with the loss of my supportive and loving in-laws and of my own mom, who loved me, supported me, and worried from afar!

Gary VandenBergh

I was 30 when I was diagnosed with diabetes and consider it a blessing that the diagnosis came a little later in life. By then, I had the tools to become an active participant in my diabetes … and I deeply believe this is what counts in caring for diabetes, whether Type One or Type Two. Despite my excellent team, at the end of the day it is I who must be present for the hints, signs and omens that this subversive disease delivers each and every day. I have to do a blood test now! I must treat a low blood sugar now! This is the constant, nagging truth of diabetes; it is my “dark passenger” (to borrow a term from the Showtime series Dexter) and if I don’t pay close attention to it, it could destroy me. I cannot let that happen.

I make my living in the high-pressured, ever-changing world of television post-production, where people work at a ridiculous pace for hours, days, even weeks at a time. I am very open about my diabetes, but most colleagues forget about it, because I have become an expert at dealing with it and keeping it under control. I recently started a YouTube channel called The Diabetes Project, with short videos about dealing with the disease.

When I’m under a deadline (which is always), the meals delivered from nearby restaurants don’t always address my health needs. Chinese and Mexican food are not a diabetic’s best friends, but I can navigate my way around too much fat and keep my sugars reasonable. I always have healthy snacks nearby—bananas, cereal bars, cheese, and an extra juice box. My diet is not perfect by any stretch of the imagination—I have stood, late at night, in front of the vending machine, waiting for that Snickers to fall—but I try to have a healthy attitude and keep this beast in control.

Ready to ride!

Exercise is another story altogether. When I was first diagnosed, I started race-walking, a good way to stay in overall shape. Then I stopped. A couple of years went by. Then I started going to the gym—a great release from the stress of work that fit into my schedule. Then I stopped. More years went by. I rationalized: I was always coaching the kids in soccer and baseball; I walked a mile or two in the city, depending on where I parked. I wasn’t “exercising,” but I wasn’t a total couch potato!

But one day my daughter, who is active and has participated in various fundraising runs, informed me that she had started a team for the Tour de Cure called DiaBEATit. How could I just sit there and watch? So I broke out the old bikes, had them spiffed up—and we’ll be riding together in the Tour de Cure! Exercise is back in my life.

So I want to thank my team—starting with Lara (because she got me to do this), Nancy, Jesse, and the current team of doctors and professionals who keep me connected to the best care available and help me navigate the jungle that the insurance industry has become. I ride for them—and I ride for you, if you are touched by diabetes. The good news is that, even though diabetes is a dastardly thing, you can be an active participant in keeping its effects far from your door.

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Meet Lance Schulman, “Nuish Jewish” Rapper and “Red Volunteer”

My name is Lance Schulman and I have had Type 1 diabetes for over 43 years. I was diagnosed when I was 17 months old. My father, Ben, was also a Type 1 diabetic. I don’t do this often enough, but I need to thank my mother, Renee, for the fact that I’m still around today. My mother said “This kid is costing me too much money” (I was going through way too many diapers), so she took me to Brookdale Hospital in Brooklyn. The hospital staff was amazed that I was alive; my blood sugar was 920! I guess I knew right from the start that I was not going to let diabetes beat me.

Lance Schulman

My parents tried to allow me to have as normal a childhood as possible. All my friends knew that I was a diabetic. They all knew if I started to act “funny” to run and tell an adult. Growing up in Brooklyn, I always thought that I was the only kid with diabetes. In 1976, when I was 10, all of that thinking changed. My parents sent me to Camp NYDA, a sleep-away camp for children with diabetes. I went to camp every summer through 1982, and learned a lot about diabetes during those seven years. I now had friends who had diabetes. What a wonderful realization for someone who thought he was the only kid with diabetes!

My next big adventure was in the summer of 1983. My doctor, Dr. Theodore Avruskin, wanted to put me on the CPI 9100 insulin pump. This was nothing like today’s pump; it was big and heavy, and a large metal needle had to be taped in place in my stomach. When I showered, I had to cover the needle and tubing with plastic and use adhesive tape to hold it in place. Before being put on the pump, I needed to be in “perfect” control of my blood sugar, so Dr. Avruskin placed me in the hospital to control my blood sugars and so that I could learn how to use the pump as a hospital inpatient—very different from being placed on an insulin pump today. Once the large metal needle started causing infections, I went back to insulin shots.

Over the years, I have had a sort of Jekyll-and-Hyde relationship with my diabetes. At times I have been a “good diabetic.” Unfortunately, at other times my blood sugar control has not been a priority. In 2002 my right foot began to hurt and feel cold to the touch. I went to see a vascular surgeon, who determined that I suffered from peripheral vascular disease or PVD. I also needed a right femoral artery bypass. After waking up from surgery, I vowed to take better care of my diabetes. I also suffer from diabetic neuropathy and my right carotid artery is completely blocked. I had to retire from my job as a medical assistant in 2007, due to diabetic complications.

Enjoying an iced coffee on the go.

Still, I try not to let diabetes and its complications stop me from doing anything. In May of last year, Camp NYDA found me again through Facebook. One friend I reconnected with was Roni Schoenberg Pagano, who works for Animas (which produces the OneTouch Ping Insulin Pump, which far outshines the pumps of yesteryear). Hearing how much time I had on my hands, Roni suggested I volunteer for the American Diabetes Association. Now, here comes the really fun part of how I got involved in the Tour de Cure.

In the ADA office I met Jessica Rosa, manager of the Tour de Cure. One Monday, Jessica told me it was her birthday. I felt bad that I didn’t have a present for her and said I would just have to write her a rap song. (A hobby of mine is turning my observations into poetry with a beat.) She loved it, and wondered if I could write one for the Tour de Cure. I did—and then she asked if I knew anyone who could make it into a video! I found Daniella Pagano, an incredibly imaginative 12-year-old who happens to be Roni’s daughter, and the 2011 NYC Tour de Cure Rap Song by Lance “The Nuish Jewish” Rapper was born. Please check out the link to the video; I think we did an outstanding job (but then again, I am a legend in my own mind). So that is how I became what I call a “Red Volunteer,” even if I can’t ride a bicycle as a Red Rider.

I appreciate your having taken a few minutes to get to know me, and would appreciate it even more if you would get involved in the Tour de Cure. You can form a team, sponsor a rider—or become a volunteer like me. We need to come together and do what has to be done to stop diabetes. I am just waiting for the day when I can walk into Baskin-Robbins and not worry about covering my carbs! Let’s make this the last Tour … as I’m not especially looking forward to finding rhymes for the word “twelve”!

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Meet Soara-Joye Ross: Award-Winning Broadway Actress… and Red Rider!

“Let’s start at the very beginning, a very good place to start…”—as Julie Andrews sings in The Sound of Music.

My name is Soara-Joye Ross and I am a Type 1 diabetic (or “divabetic,” as I like to call myself). I am a daughter to five, a sister to three, a friend to many (especially Rokia, who wears a DIVABETIC t-shirt just to support me), and a mother to one (my gorgeous Pomeranian, Lyric). Soara-Joye means “singing bird soars joyfully,” which is rather fitting, since I’ve been singing since I was in kindergarten. I have an amazingly funny and supportive family. My mother called me this morning to tell me that she had bought some cotton swabs for me (to aid in checking my glucose levels) and that, if I really needed them, she’d come all the way from Queens to Brooklyn to give them to me … on public transportation! She’s a doll!

Soara-Joye Ross

I have also reunited with my birth family. I am adopted and always knew that one day I’d want to find my biological parents. In 2005 I hired a private investigator to find my birth mother—and he found her! Since then, I’ve also reconnected with my paternal grandmother, maternal grandfather, and—just recently—my birth dad. Yes, holidays can be a bit overwhelming!

I’m also an award-winning actress and have been with my agent, Renee Glicker, for 10 years. Performing on Broadway, at Lincoln Center, and Carnegie Hall in shows like Les Misérables, Dessa Rose, and Jerry Springer: The Opera have been highlights of my career. I was nominated for “outstanding performance by an actress in a leading role” when I played the title role in the Elton John musical Aida; what a dream come true! At 16 I traveled all over Europe, performing as a soloist in Hungary, Austria, and the Czech Republic. I’ve toured throughout Germany and the Netherlands in Smokey Joe’s Café and Ain’t Misbehavin’ and even played an American diva in the popular show Palazzo Colombino in Basel, Switzerland. I’ve been blessed to work with talents like Gladys Knight, Ashford and Simpson, Anika Noni Rose, Lea Solanga, Harvey Keitel, LL Cool J, Donna McKechnie, and even Natalie Portman in the feature film Garden State. I absolutely love performing!

I was introduced to my co-star (a.k.a. Type 1 diabetes) in my late 20s, and remember it as if it were yesterday. Before rehearsal on the morning of September 18, 2007 (which was my brother’s birthday and the day before my opening night), I wasn’t feeling very well. During the two weeks prior I had been dealing with an array of health issues, but was told by my doctor that I had a throat infection. As I walked up the subway stairs, my heart began to race at an unbelievable pace and I could barely walk! “This can’t be just a throat infection,” I thought. I hailed a cab and headed to Saint Vincent’s Hospital. Within an hour, I found out that my sugar was 650, I was in diabetic ketoacidosis—and I hadn’t gone into a coma solely because I’d kept myself extremely hydrated. I stayed in ICU for two days and wasn’t able to do the show, but was relieved that finally I knew what was wrong. I got cards and visits from family, of course, but even from members of Les Miz and the new musical I was not able to do. Thank goodness for all of their support; I couldn’t have done it alone!

Having to share the stage with my co-star has been challenging, to say the least, but I am stronger, wiser and better for it! I feel like I understand pain more, disabilities more—life more. I’m a better actress for it and a better human being. I know that every day is truly a gift from God and I’m grateful to still be alive!

In Central Park, ready to ride!

I am now part of an amazing nonprofit organization called ACT1 Diabetes (Adults Coping with Type 1 Diabetes), founded by another Type 1 diabetic, Katie Savin. I co-facilitate a wonderful support group for young women with Katie, and even serve as donations coordinator for the Supply Exchange Program!

Recently I rode on a training ride for the Tour de Cure. It was only my fifth time on a bike in Manhattan, and I decided to do my own thing since the other riders were a lot more advanced than I. I followed the exact route they were taking, but at my own pace: up to the George Washington Bridge via the Hudson River Greenway, which is the most amazing, car-free, bicycle and pedestrian pathway in New York City! It is such a wonderful resource and I’m proud to say that, even though it took me about four hours, I rode from 19th Street and 6th Avenue all the way up to the bridge and then back downtown to 14th Street and 8th Avenue! Yes, I stopped about eight times to check my sugar, eat, drink, rest, check, drink, check, rest, eat, drink, check, etc., but that’s how it is when you’re a diabetic training for an event like this… better to be safe. It was one of the most physically challenging experiences I’ve ever had, and I look forward to doing it many more times!

I must admit that if I weren’t a Type 1 diabetic, I don’t believe I ever would have ridden those 25 miles this past weekend. Sure, I’ve been on many walks (like the Aids Walk) before my diagnosis, but training to ride a bike 30 miles in the Tour de Cure? That’s a whole new level! And on April 30, I’ll be going to the Blessing of the Bikes at St. John the Divine, too. How exciting! Me, Soara-Joye Ross, actress, singer, Pomeranian owner, divabetic—and cyclist!

I guess my co-star and I are in another scene now; shucks, I think we’re in another play! It’s called “The Ride of a Lifetime!” Cheers, everyone!

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Meet Paulina Vasiliev, Tour de Cure Youth Ambassador

Our Youth Ambassador, Paulina Vasiliev, found out about the Tour de Cure just a few days after being diagnosed with diabetes.  While she was in the hospital getting hooked up to an insulin pump, Paulina met diabetes educator and Animas marketing representative, Roni Pagano (who also lives with diabetes and happens to be captain of the Tour de Cure’s Team Red). Impressed by Paulina’s eagerness to help this newfound community of people living with diabetes, Roni told Paulina about the American Diabetes Association’s upcoming NYC Tour de Cure and put Paulina in touch with Jessica Rosa, who also lives with diabetes and is managing the event. Paulina will be helping to coach cycling teams on their fundraising and marketing efforts. Last month, she spoke at the Tour de Cure’s Kick-Off party, and is being highlighted every step of the way for her courage to battle this disease.

My name is Paulina. I’m 10 years old. I live in New Jersey, and this is my life story and how I got diagnosed with diabetes.

First, I come from a Russian family, and I have one older brother and one younger sister. My mom is studying to be a nurse, and my father is a singer.

From my father’s side, I love to sing. I have been singing since I was 2. I have a very supportive family and vocal coach. They are encouraging and loving. I love the stage and treat it like my second home. (The radio blasts in my car and people stare at us!) I also have been dancing since I was 4 and acting since I was 5, but I have mostly focused on singing.

In late October of 2010, I started having massive stomachaches after I ate. The doctors examined me and did tests, but detected nothing … and said it was because I ate too quickly or too slowly. This went on until February 2011. It was a Saturday morning, and suddenly I wasn’t able to walk and my skin was horribly dry. My mom brought me to the doctor right away. They took a blood test and my sugar was at 380. But I also had high ketones.

I went to the hospital, and they took a million dollars’ worth of blood work. That’s when the news came: I had Type 1 diabetes. Sadly, CentraState Medical Center in Freehold, N.J., didn’t have a pediatric intensive care unit. So I went in the ambulance truck on a journey to St. Peter’s Children’s Hospital in New Brunswick. They took great care of me! I was also blessed by Bishop Paul G. Bootkoski of the Roman Catholic Diocese of Metuchen.

My friends in school found out the bad news about me the following Monday. I got 24 valentine cards, because it was Valentine’s Day when I was in the hospital! I missed three of my best friends’ birthdays, but I came home on one of them. He was so happy to see me and was so caring, and that Sunday I had another birthday party to go to, and had everyone by my side.

My doctor, Dr. Svetlana Ten, gave me an insulin pump as soon as I saw her at the office. This pump allows me to eat as much as I want, and whenever I want. I was introduced to Roni Pagano, territory manager of the pump company, Animas. She is great, and she made sure that my mom and I both knew how to operate this little thing with three buttons – “a life-saver,” as we call it at home.

There are a few changes in my life, and it is not easy to deal with diabetes every day. I have to count how many carbs I am eating, but it is just a little bit more math in my life! I’m still singing and acting and dancing. I love exercising, and I go to the gym every other day. That helps a lot! I am happy I can swim, play basketball, run and do all that other children do.

Paulina addresses the crowd at the Tour de Cure's Kick-Off party in Manhattan. Jessica Rosa is at left.

I was lucky to meet great people in my life – people who help me understand what is going on with me, and who have enabled me to find out I am not alone with this problem. It turned out that I was honored to give a speech at the Kick-Off event for the Tour de Cure on March 24 in New York City!

I will be biking as a Red Rider with the Tour de Cure, along with a lot of other people, to show how important it is to support people with diabetes and help to raise money … and to show how strong we are. And I will be singing there, too – to say “thank you” to so many people who took care of me at the hospital, and to all those who love me and support me and my family. Come, join us on June 5! It is great to know you are not alone!

Love you all,

Paulina.

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Come Along for the “Ride of Your Life”!

Welcome to the brand-new community blog for the American Diabetes Association’s NYC Tour de Cure!

It’s great cause for excitement, because the Tour de Cure marks its 20th anniversary this year … and it’s going to be the best one yet! Some 700 riders participated in the NYC Tour last year and raised $280,000; this year, we’re aiming to have 1,000 riders raise a total of $400,000!

Won’t you join us? If you can’t hop on a bike this year, please sponsor a rider. And if you want to ride but don’t own a bike, check out our first-ever partnership with Chelsea Bicycles. For every $75 you raise for the Tour, you earn a free one-day bike rental … so you can get into training now! Call 1-888 Diabetes, Ext: 3431 to enroll or get more information.

The most amazing thing about the Tour de Cure is the people who make it happen: riders, volunteers, staff members, and sponsors. Over the next three months, you’ll get to meet some of these extraordinary folks through their personal stories on this blog.

Your comments and suggestions are welcome … and if you’ve signed up to ride and have a story to share yourself, please let us know!

Warm regards,

Jane Rubinsky, Tour de Cure Social Media Chair


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