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Mary Tyler Moore, Nick Jonas, Sugar Ray Leonard Plead for Federal Funding for Diabetes Research

June 24, 2009

Join 150 Kids with Type 1 Diabetes on Capitol Hill for JDRF’s Children’s Congress 2009

WASHINGTON, June 24 /PRNewswire-USNewswire/ — Nick Jonas, Mary Tyler Moore, Sugar Ray Leonard and kids with type 1 diabetes testified this morning before the Senate Committee on Homeland Security and Government Affairs on the need for funding for type 1 diabetes research.

The hearing was the culmination of the Juvenile Diabetes Research Foundation’s Children’s Congress, the largest grassroots event held in support of research for type 1 diabetes. More than 150 children and teenagers representing all 50 states took part in JDRF’s Children’s Congress, which included a visit with President Barack Obama at the White House, a Town Hall panel of athletes and celebrities impacted by diabetes, individual visits for each kid delegate with their senators and representatives, and the Senate hearing.

“While technology has made it much easier for me to manage my diabetes, technology is not a cure. Insulin is not a cure. Like everyone here today, I know that the promise of a cure lies only in research,” Mr. Jonas, who was diagnosed with type 1 diabetes at age 13 said. “I ask that each of you join me in supporting the renewal of the Special Diabetes Program next year so that the researchers can continue their work on a cure for our disease. My life depends on it. All our lives depend on it.”

“Diabetes has changed my life,” he said. “But I know I’ve benefited from the government’s investment in diabetes research. With the help of Congress, I’ll only have to wait a little bit longer for a cure.”

“With your help, we’re making real progress towards discovery, development, and delivery of cures and significantly improving the health outcomes of people with type 1 diabetes and its complications,” Ms. Moore, who was diagnosed as an adult, testified. “With your help, new life-changing therapies and cures will, finally, be within our reach.”

“My decision to turn professional was based largely on the desire to help my family cover the costs of my father’s care,” said Mr. Leonard, whose father had diabetes. “Thanks to Congress’ support, the advances made through research are bringing us closer to the cure that will allow these children to finally knock out diabetes.”

The Senate hearing, “Type 1 Diabetes Research: Real Progress and Real Hope for a Cure,” included testimony from Ms. Moore, Mr. Jonas, Mr. Leonard, Dr. Griffin Rodgers, Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and four children with type 1 diabetes. The hearing was chaired by Senator Susan Collins (R-ME).

The testimonies of Ms. Moore, Mr. Jonas and Mr. Leonard are included.

About JDRF

JDRF is the leader in research leading to a cure for type 1 diabetes in the world. It sets the global agenda for diabetes research, and is the largest charitable funder and advocate of diabetes science worldwide.

The mission of JDRF is to find a cure for diabetes and its complications through the support of research. Type 1 diabetes is an autoimmune disease that strikes children and adults suddenly, and can be fatal. Until a cure is found, people with type 1 diabetes have to test their blood sugar and give themselves insulin injections multiple times or use a pump — each day, every day of their lives. And even with that intensive care, insulin is not a cure for diabetes, nor does it prevent its eventual and devastating complications, which may include kidney failure, blindness, heart disease, stroke, and amputation.

Since its founding in 1970 by parents of children with type 1 diabetes, JDRF has awarded more than $1.3 billion to diabetes research, including more than $156 million in FY2008. In FY2008, the Foundation funded more than 1,000 centers, grants in laboratories, hospitals, and industry, and fellowships in 22 countries.

For more information, visit the JDRF web site at www.jdrf.org or call 800-533-CURE.

For more information on Children’s Congress, visit www.cc.jdrf.org.

Testimony of

Ms. Mary Tyler Moore

International Chairman, Juvenile Diabetes Research Foundation

At the Hearing Entitled: “Type 1 Diabetes Research: Real Progress and Real Hope for a Cure”

Wednesday, June 24, 2009, 9:00 a.m.

Before the Senate Committee on Homeland Security and Governmental Affairs

Good morning Senator Collins, Senator Lieberman, and members of this committee.

As International Chairman of the Juvenile Diabetes Research Foundation, I want to thank you for your leadership and commitment to sustaining robust federal funding for diabetes research. Your efforts are resulting in real progress and real hope for millions of Americans personally affected by type 1 diabetes.

I am honored to be accompanied today by all of the terrific young delegates and special guests who surround us in this chamber and join me on this panel. We sincerely thank you for providing us the opportunity to testify about an issue that we know all too well — life with type 1 diabetes and our hope for a cure.

Ten years ago, Tommy Solo — an 8 year old JDRF volunteer from Boston — had a big idea. Tommy was frustrated with his Type 1 diabetes and was looking for something he could do to move us closer to a cure. He thought, “Why not have kids with diabetes, like me, go to Washington, D.C. and tell Congress we need their help?”

Even at age 8, Tommy understood, intuitively, what JDRF’s Moms and Dads and people personally affected by Type 1 had always known: When confronted by challenges to our personal well-being, the solution starts with our willingness to share our stories, make our case, and ask others to join us as partners in our cause.

Senators, we are grateful to you for welcoming our Children’s Congress delegates to these rooms over the years since, for listening to us, and for remembering us and our partnership for a cure with your legislative leadership and support.

But because our work, together, will not be done until we have found a cure, here we are again today. More than 150 child delegates from across the United States and several countries join me to participate in the 10th anniversary Children’s Congress, acknowledge the remarkable progress we’ve made, and reflect on the challenges which remain.

As many of you know, I have endured the ups and downs of type 1 diabetes for almost 40 years. And as all of these children and their families can attest, every single day with type 1 diabetes tests our will and determination to live a normal life. Each day I check my blood sugar several times, count carbohydrates in what I am going to eat, take multiple insulin injections, and exercise.

Even with this structured regimen, terrific doctors, and the loving support of my husband Robert, my blood sugars can still fluctuate tremendously. If I don’t take enough insulin, my sugars can go dangerously high — which, over time, can lead to long-term complications such as blindness, nerve damage, kidney failure and a host of other serious ailments. If I take too much insulin, my sugars can drop frighteningly low, which can acutely lead to feeling really sick and cold and anxious and lost and, in turn, lead to unconsciousness, seizures or worse.

I actually had my first hint of impending long-term complications of diabetes in 1981 — after only about 11 years of having the disease. I truly wish the technology that is available today and the understanding that we now have about how to manage diabetes was available when I was first diagnosed. Back then, to get an idea of what your blood sugar was, we relied on urine tests. They were not all that accurate, timely or helpful. I did the best that I could to control my blood sugars, but it was really difficult. And my doctors, even if they wanted to, couldn’t really push me to do what was — as a practical matter — not really doable. As a result, by 1981, I was well on my way to having vision-threatening diabetic retinopathy.

I wasn’t alone. Diabetic Retinopathy is the leading cause of adult blindness.

I was terrified. How was I to continue doing the things I loved most — dancing, horse back riding, window shopping on Madison Avenue — if I went blind?

At the time I was diagnosed with Type 1, there was no simple treatment to prevent diabetic retinopathy. But when my retinas started to show evidence of damage due to diabetes, there was, thankfully, a new procedure available called “laser photocoagulation” that was able to keep me from going blind.

But not without costs. Because, in order to halt the progression of diabetic retinopathy and save your “central vision,” the laser must literally burn holes in your peripheral retina.

So the combination of the disease itself and its vision preserving treatment has resulted in my having a difficult time seeing when it is dark or when I’m in a room that isn’t well lit. My peripheral vision, and vision below my waist, is also very limited. Simple things like navigating curbs on a street or changes in levels between rooms in an unfamiliar home, or seeing one of my precious pups taking a nap in an unusual place, or recognizing a welcoming hand that’s been patiently waiting for me to shake it, are challenges of the first order!

For years, I kept the full impact of my diabetes under wraps. While people knew I had type 1 and that I was a long-time, outspoken advocate for a cure and International Chairman of JDRF, the general public didn’t know the extent to which diabetes affected my day-to-day life.

But recently, at the prompting of a lovely young woman named Diane Revzin, and her father, Phil, I wrote a book about living with diabetes. Diane is a 19-year-old fellow diabetic; Phil is a book publisher.

My book is entitled “Growing Up Again — Life, Loves, and Oh Yeah, Diabetes.” It chronicles my battles with type 1 in the context of my broader life experience and career, and I hope it informs and even inspires people facing similar challenges. Though I am not here to promote my book, I’m happy to note that all my proceeds from its sale will be donated to JDRF to advance research for a cure.

As JDRF’s International Chairman, I am, actually, just one volunteer in an army of determined moms, dads, children, loved ones and friends personally affected by diabetes. We are not sitting back waiting for the cure. These children before you have built lemonade stands, created walk teams, held bake sales, and organized car washes. Most importantly, they have spoken out about their lives with diabetes and shown, by their courage and hard work, that they can accomplish anything — including being an important part of finding their own cures. Overall, JDRF’s efforts have enabled us to contribute over $1.3 billion to diabetes research since our founding in 1970, and over $150 million last year alone. But curing diabetes is an enormous task. We can’t do it alone. And that’s why we’re here.

We are so very grateful that this committee and Congress as a whole, have been our true partners in the fight to cure type 1 diabetes and its complications. The Special Diabetes Program — which has been renewed by Congress four times since it was enacted in 1997 — currently provides $150 million per year for type 1 diabetes research. This critical funding has led to some remarkable advances… including real progress in developing new therapies that are potentially life-changing for all of us sitting before you, today.

I will ask our friend, Dr. Griffin Rodgers the Director of the NIDDK, to elaborate more on the scientific progress we’ve seen, thanks to the Special Diabetes Program funding. But there are a few areas of research that I would like to touch upon today, myself — areas that affect me, personally.

Researchers are using the Special Diabetes Program funds to find a way to prevent and reverse diabetic retinopathy. This is very exciting work and it gives me great hope, especially for children and young adults with Type 1. As a result of these advances, people with diabetes may be able to live with far less fear of visual loss and have an alternative to laser therapies’ “burn the village to save the village” approach.

Major advances are also being made in the development of new devices, called Continuous Glucose Monitors or CGMs. By measuring blood sugars, automatically, every few minutes, and graphically showing the results and the up and down trends, CGMs help people to better understand their diabetes, and avoid extreme highs or lows.

Teams of researchers are now working hard to connect CGMs with insulin pumps via a control algorithm — thereby creating a fully automated system that can closely mimic the blood sugar control workings of a human pancreas. This intelligent pump would automatically administer insulin based on a person’s blood sugar level and whether it was rising or falling. Human clinical trials are already underway, and the early results are very encouraging.

In short, with your help, we are making real progress towards discovery, development and delivery of cures and significantly improving the health outcomes of people with type 1 diabetes and its complications. To keep up this progress, however, Congress must renew the Special Diabetes Program in 2010. Without your help, we face a 35% cut in federal funding for type 1 research — a cut that could turn hope into despair. With your help, new life-changing therapies and cures will, finally, be within our reach.

When a child is diagnosed with diabetes, it is a hectic, crazy time. There are ambulances or emergency rooms. You hear medical terms you never knew existed. Days blur into nights. But one thing is common at every diagnosis. Every parent of these delegates here today, every parent of every child ever diagnosed with type 1 diabetes makes a promise to them. We’ll do everything thing we can to find a cure for you. We promise.

As their Chairman and “oldest delegate” — by just a year or two — I’m proud to be leading our 2009 Children’s Congress Delegates in their efforts in DC this week. As we have started to do in this special hearing, today our goal is to persuade our Senators and Representatives to also make a promise. We hope you will “promise to remember us” when you vote on the Special Diabetes Program and other important issues that affect all of us with diabetes.

The energy and commitment of families affected by type 1 and the strong support of champions like you on Capitol Hill make me certain that we will, soon, be able to turn the promising research made possible by JDRF and the Special Diabetes Program into our “promises kept for a cure.”

Thank you from the bottom of my heart for all that you do for these children, for me, and for all others who are touched by type 1 diabetes. I look forward to continuing to work with you as we pursue our mutual goal of a cure. I promise.

Testimony of

Mr. Sugar Ray Leonard

World Champion Boxer

At the Hearing Entitled: “Type 1 Diabetes Research: Real Progress and Real Hope for a Cure”

Wednesday, June 24, 2009

9:00 a.m.

Before the Senate Committee on Homeland Security and Government Affairs

Good morning Senator Collins, Senator Lieberman, and members of the Committee. I am Sugar Ray Leonard, and I appreciate this opportunity to appear before you today. I would like to testify about the burden of diabetes and the need for continued research funding to cure this devastating disease.

First, I would like to thank Senator Collins for her unwavering dedication to people with diabetes. As a diabetes advocate, I know how grateful we all are to have you as one of our champions.

It is wonderful to be here in Washington, DC as part of the Juvenile Diabetes Research Foundation’s Children’s Congress. I grew up not far from here, in Palmer Park, Maryland. My teenage years were spent in the boxing ring, winning a number of amateur boxing championships. I won National Golden Glove Championships, AAU championships, and gold medals at both the Pan American Games and the 1976 Olympics in Montreal.

During this time of great personal accomplishment, privately my family faced tremendous challenges as my father struggled to manage his diabetes. We are not alone in this fight. Nationwide, more than 24 million people have diabetes, a chronic disease that imposes a huge emotional and financial burden on patients and their families.

I know all too well the toll that diabetes can take on a family. As I closed the book on my amateur boxing career, I planned to begin a new chapter in my life as a college student at the University of Maryland, but I had to face the reality of my father’s illness, and the incredible medical bills that resulted from his life with diabetes. My decision to turn professional was based largely on the desire to help my family cover the costs of my father’s care.

Due to the long list of complications associated with diabetes, the cost of this disease is overwhelming for any family. But it’s also overwhelming for the nation and our health care system. Diabetes costs are currently estimated at $174 billion each year — $116 billion in direct medical costs and $58 billion in lost productivity and disability. In California, where I now live, the direct and indirect costs of diabetes totaled more than $24 billion in 2007.

Thankfully, the Juvenile Diabetes Research Foundation has partnered with the federal government to make a meaningful investment in diabetes research. I was proud to serve as an International Walk Chairman for JDRF, which has provided more than $1.3 billion in funding for type 1 diabetes research over the years. Last year alone, JDRF funded more than $150 million in diabetes research.

With the leadership of Sen. Collins and our many other diabetes champions on Capitol Hill, the federal government has been a real partner along our path toward a cure for diabetes. We are so thankful to Congress for renewing the Special Diabetes Program. That program provides $150 million each year for diabetes research at the National Institutes of Health and an equal amount for the treatment and prevention of diabetes in American Indian and Alaska Native populations.

Since its inception in 1997, the Special Diabetes Program has funded research that has shed important light on the causes of type 1 diabetes, as well as who’s at risk for developing the disease. The research funded by the Special Diabetes Program is unique because its discoveries are important not only to people with type 1 diabetes but also to people who suffer from similar auto-immune diseases. The therapeutic advances in diabetes complications made possible through the Special Diabetes Program also apply to people with type 2 diabetes, making this program a critical component of any effort to fight diabetes. Please help us keep up the momentum behind this research by ensuring the renewal of the Special Diabetes Program.

Life with diabetes is sort of like life in the boxing ring. Some days, you don’t feel on top of your game, and your opponent can get the best of you. Other days, you’re managing the fight well and able to outsmart and outbox your opponent. One of my most memorable fights was my re-match against Roberto Duran. I lost my welterweight crown to Duran just a few months earlier, and I couldn’t wait to get my title back. I fought a smart and skillful match. With just seconds to go in the 8th round, Duran suddenly walked back to his corner, threw up his hands and said, “no mas.” No more. He gave up.

Now, it would be easy for these children here today to say “no mas.” The fight against diabetes is a tough one. Some days, nothing seems more difficult, more impossible, to battle. There are days we all think about saying “no mas.” But it’s clear these children have fight in them. They’re willing to go as many rounds as it takes to beat this formidable opponent. And we have you in our corner. Thanks to Congress’ support for the Special Diabetes Program, the advancements made through research are bringing us closer to the cure that will allow these children to finally knock out diabetes.

Thank you again for having me here to testify today, and I look forward to answering your questions.

Testimony of

Mr. Nick Jonas

Musician, Jonas Brothers

At the Hearing Entitled: “Type 1 Diabetes Research: Real Progress and Real Hope for a Cure”

Wednesday, June 24, 2009

9:00 am

Before the Senate Committee on Homeland Security and Governmental Affairs

Good morning. My name is Nick Jonas, and I’d like to thank you for having me here today. I’d like to share my story of living with type 1 diabetes, and talk about the need to fund research to find a cure.

First, I would like to thank you, Senator Collins, for chairing this hearing and for being such a champion for all of us with diabetes. Everyone here today for the Juvenile Diabetes Research Foundation’s Children’s Congress is grateful for your leadership on the Senate Diabetes Caucus and your commitment to people with type 1 diabetes. We are lucky to have you pushing for policies that will bring us closer to a cure.

In one way, or another I have spent most of my life performing. I’ve been writing songs since I can remember, and I love sharing my passion for music. As a little kid, I sang in the choir in my dad’s church, and then performed on Broadway. As the Jonas Brothers, my brothers Joe, Kevin and I have written songs, made albums and toured the country, playing our music for people all over America.

It was during a concert tour in 2005 that I was diagnosed with type 1 diabetes. My brothers were the first to notice that I had lost a lot of weight — fifteen pounds in two weeks. I was thirsty all the time and had a bad attitude, which isn’t like me at all because I’m a really positive person. It would have been easy to blame my symptoms on a hectic schedule. But my family knew I had to get to a doctor.

The normal range for blood sugar is between 70 and 120. When we got to the doctor’s office, we learned that my blood sugar was over 700. The doctor said I had type 1 diabetes, but I had no idea what that meant. The first thing I asked her was, “Am I going to die?” She assured me that I wasn’t going to die, but that I’d have to manage this disease for the rest of my life. We went right to the hospital where I spent three days, including a crash course in getting my blood glucose levels in control and living with diabetes.

It hasn’t been easy, but diabetes technology has really helped me to manage my diabetes. At first, I took insulin shots, but it was just too hard on the road to give myself shots. I switched to a pump, which has been great. Since then, my average blood glucose levels have come down, and I’m able to use the pump to better estimate how much insulin I need based on the carbs I eat. I am also considering a continuous glucose monitor, but for now, I still prick my finger to check my blood sugar. I do that up to 12 times a day, including right before I began this testimony.

While technology has made it much easier for me to manage my diabetes, technology is not a cure. Insulin is not a cure. Like everyone here today, I know that the promise of a cure lies only in research. I am grateful that Congress renewed the Special Diabetes Program last year, which has helped researchers make important discoveries into what causes type 1 diabetes. This vital program has also funded research to test new drugs and therapies that could treat or cure patients with type 1 diabetes, and may even lead to an artificial pancreas one day. I ask that each of you join me in supporting the renewal of the Special Diabetes Program next year so that the researchers can continue their work on a cure for our disease. My life depends on it. All our lives depend on it.

After I was diagnosed with type 1 diabetes, I wrote a song called A Little Bit Longer about dealing with diabetes. I’d like to submit a copy of the full song for the record, but I’d like to read one of the verses, which explains my outlook on life with diabetes.

All this time goes by

Still no reason why

A little bit longer

And I’ll be fine

Waitin’ on a cure

But none of them are sure

A little bit longer

And I’ll be fine

Diabetes has changed my life. But I know that I’ve benefited from the government’s investment in diabetes research. With the help of Congress, I’ll only have to wait a little bit longer for a cure.

In the meantime, I’ve decided not to let diabetes slow me down. In just the last two months, my brothers and I launched a new TV show, released our third album and began a world concert tour. My approach to managing diabetes is to focus on simple wins — little things I can do each day to achieve my goals. Over time, these everyday victories can make a big difference in your life — just like every research advancement moves us along on our path to a cure. While on that path, I want to be a positive face for diabetes. I want to show kids with type 1 diabetes – like all the kids sitting with me today – that they can live with diabetes and still make their dreams come true.

Thank you for the opportunity to appear before you today, and thank you for your commitment to diabetes research. With your help, a little bit longer and we will all be fine.

SOURCE Juvenile Diabetes Research Foundation


Source: newswire