Category Archives: The Mission — Cheating Destiny

Announcing The Kathryn Thompson Leckie Scholarship Fund at Virginia Tech; We Will Rally For “Front Page Kate”

Good News to All: Our first donations are in! The Fund Is Moving Forward.

Kathryn Thompson Leckie and her two sons, John and James

A photo of Kathryn and her two sons, John, standing, and James, kneeling, on the family’s front porch in Frederick, MD. Family and friends have established a scholarship fund in her memory at Virginia Tech.

This is the first of many heartfelt Thank Yous to all donors — for your contributions of time, talent and treasures to the Kathryn Thompson Leckie  Memorial Scholarship Excellence Fund at Virginia Tech.

All donations at all levels are important toward our goal. We will post donor lists frequently as an incentive and encouragement for all to contribute something. Log in to www.givingto.vt.edu or send a check to Virginia Tech Foundation to donate. The Fund # 860705.

And our common goal is clear: To raise the funds necessary ($50,000) in 5 years to establish an annual scholarship that supports excellence in journalism at VT and honors Kathryn’s personal and professional contributions to our lives. This is the beginning of something wonderful. Thank You.

Who was Kathryn Thompson Leckie?

Kathryn was a native of Chester, Va., and she graduated from Virginia Tech in 1983 with a degree in Communications.  She was the Frederick (MD) News-Post’s courts and cops reporter for 17 years.  Her stories routinely landed on the front page, earning her a nickname in the local community as “Front Page Kate.”  She died in February 2012 after a courageous battle against cancer.  Her family and friends have created the Excellence Fund at Virginia Tech

Kathryn and I worked on the Tech student newspaper, The Collegiate Times, and we shared many long and satisfying days practicing journalism at the CT and in our first professional jobs in Charlottesville and Lynchburg, respectively.  Her death was a shock and a reminder that bad things happen to good people everyday, but we must rally through the pain and tears. We must celebrate Kathryn’s life with a positive contribution. Cancer, like diabetes, does not define us. It inspires us all to achieve great things!

Zip the Cure: Buy A City Or Town For Only $50 And Donate To Type 1 D Research

This is a cool idea! Zip the Cure is a unique fundraising opportunity through JDRF for the ultimate reward: a cure for type 1 diabetes (T1D) and its complications. Originally created by 17-year-old Monica Oxenreiter from Pittsburgh, PA, Zip the Cure (ZTC) allows you to “sponsor” a zip code in the U.S. for just $50. The money goes to JDRF to fund type 1 diabetes research to cure, treat, and prevent T1D.

Here’s how it works:

• To sponsor a zip code go to zipthecure.com and use the search to find your zip code. If it’s already sponsored, you can choose another one close to you, or maybe the zip code of your child’s school; where you were born, or where your grandparents or relative lives. You can sponsor any zip code anywhere you desire!
• Each zip code costs $50 to sponsor. Imagine if we sponsored all the zip codes in the United States – that would be more than $2 million to support JDRF!
• There is no limit to the number of zip codes you can sponsor.
• You can name your sponsored zip code in honor of someone, in memory of a loved one or for yourself.
• You will “own” your zip code through the end of the calendar year. On January 1st, the map resets.

Let’s try and sponsor all the zip codes in our area. For any questions please visit zipthecure.com.

Show Me The Money: Diabetes Research Funds Continue To Fall Well Short Of A Cure

Ever since I started my blog, I wanted to “republish” this small section of James Hirsch’s fair and honest book, “Cheating Destiny: Living with Diabetes.”

Hirsch writes about the many researchers, scientists, doctors and advocates who are still working on “conquering” but maybe not “curing” diabetes. Of course, money is one issue. Ronald Kahn of the Joslin Diabetes Center in Boston has tried to calculate the government’s neglect of diabetes research funding. More than 20 million Americans have diabetes, Type 1 and 2, which translates to about 7 to 8 percent of the total U.S. population.

Dr. Denise Faustman

Dr. Denise Faustman, a veteran diabetes researcher, made Wall Street Journal Headlines in 2006 in a story titled: “Confirming Hope on Diabetes: A Controversial Therapy for Diabetes Is Verified.” Her story is included in Hirsch’s book.

Consider these stats about our country’s lack of public support for a growing diabetic epidemic.

  • Public spending on diabetes is about $50 per diabetic, based on 2007 financial data.
  • The average cost of care per diabetic — what you spend on medicine, equipment, etc — is between $10,000 and $20,000.
  • 32 percent of the nation’s Medicare budget is spent on people with diabetes.
  • Since 1980, the NIH budget for diabetes has increased by 240 percent to $1.1 billion.
  • NIH total expenditures have grown by 261 percent, thus the percentage allocated for diabetes has declined as the number of diabetics has doubled.
  • In 2004, the NIH spent about $68 for each diabetic compared to $16,936 for each patient with West Nile virus.

“Our investment in the future, the future of all these people, amounts to less than half of one percent of what we’re spending on the disease,” Kahn told Hirsch, adding that even the tire industry spends at least 3 percent of its sales on research. “It’s simply not enough. I can’t say that if we invested ten times as much we’d move ten times faster, but we would move faster.”

So why would the West Nile Virus receive more funds than Diabetes, you may ask? Hirsch contends that the perception of insulin as a kind of cure — or at least a potent remedy — has made other diseases seem to be a larger threat. Infectious diseases, in general, receive priority for government funding. That makes sense to me because government’s job is to protect us against epidemics, but it does not address the obvious lack of public funding for Type 1 diabetes, an auto immune disease that also strikes suddenly,  without warning and is largely unpreventable. I could not “guard” against the Type 1 diabetes bug bite, although researchers believe that genetic and environmental factors do contribute to a person’s chances.

In today’s recessionary economic climate, I understand that taxpayers can not support every worthwhile disorder or disease. A few years ago, well about 40 years to be exact, President Richard Nixon declared a “war” on cancer and urged Americans to spend money to defeat it. Although some cancers are beatable today, I don’t think anyone would say we’ve won that war? And 40 years ago a group of angry and fired up parents formed JDRF, to raise money for better research and finding a cure for their children suffering with Type 1 diabetes.

Today, hoping for a cure is still a good thing. May is my anniversary month — I’m living 14 years with this uninvited house guest. I still believe things will get better in the near future for me and the 3 million Americans living with Type 1. However, hoping for a cure may also be unhealthy for the person living with diabetes.

As Hirsch, also a Type 1 diabetic and father of a child with the disease, correctly concludes: “If I believed (a cure) was ‘around the corner’ or five years away or even possible, it would have been easy to lapse into bad habits. Why go through the daily demands, frustrations and indignities of tight glucose management when a medical miracle would soon deliver me from my burdens? Diabetes is too taxing, too unforgiving, to hold out hope. It’s the ultimate paradox of the disease: if you have it, you have to live your life as if you’ll never be cured.”

Is Type 1 Cure Research Funding Focused Enough? A New Report Worth Reading

Until yesterday, I had never heard of the JDCA, the Juvenile Diabetes Cure Alliance, in my 14 years of living with Type 1D and volunteering in my local diabetes community.

Diabetes Advocates Push Congress For Federal Research Funds

Chris Schutt, his son, Ned, American Idol Singer Elliott Yamin and I advocate for sustained federal research funds with U.S. Rep. Eric Cantor, R-VA, in 2009.

Now I have. This month, the JDCA has introduced its latest report , “Is Type 1 Cure Research Funding Focused Enough?”

The report takes a look at a very important issue relating to cure research. Are the organizations being too broad when it comes to outlining plans for a type 1 diabetes cure and when funding projects? Based on JDCA’s research and the fact that there is no cure on the horizon, the non-profit’s analysis suggests that this is the case. The JDCA report says, “Without clearly defined goals, the non-profits are funding a wide array of research projects. As a result, a lot of money goes into efforts that are not working to deliver a Practical Cure for type 1 diabetes.  This diverts resources from those projects that are working towards a specified cure goal that could help people now living with the disease.”

If you’re living with this chronic disease, you wanted a cure YESTERDAY. It’s been over 40 years since a group of parents founded the JDRF at their kitchen table and yet We R still seeking a Cure.

In order to improve the quality of life for Type 1Ds, it’s important to listen and gather as much relevant information as possible. We must keep asking the researchers, organizations and manufacturers “When?” When we will see real progress. We must push them to be smarter and more targeted with a limited amount of dollars because We R the Cure. We R doing this for ourselves and the generations to come.

The JDCA is a self-funded non-profit that aims to educate donors and prompt transparency in the charitable organizations that raise money to support research.  JDCA says it is an independent analyst of the type 1 diabetes charitable universe and brings a business-like perspective to focus research toward a Practical Cure.  Their mission is to direct donor contributions to the charitable organizations that are most effective at allocating funds to research opportunities that maximize chances of curing type 1 diabetes by 2025.

Profiles In Courage: Country Singer, Elite Ironman Triathlete Call Diabetes Their Inspiration For Success

It’s what you might call “ironic” or perhaps it’s a family bond among all Type 1 Ds.

Country singer George Canyon and Ironman Triathlete Jay Hewitt came to Richmond recently to share their inspirational stories with the diabetes community. I don’t know if the Canadian singer and the United States athlete know each other or if they’ve ever met. But as the two men told their stories of living and winning with diabetes last March, they reached a surprisingly similar conclusion.

Country Singer George Canyon and We R the Cure Editor Mike Anderson

Country Singer George Canyon, left, and Mike Anderson at March 24 event in Richmond. Canyon said Type 1 diabetes is not an excuse for failing to achieve your dreams in life. George has a new single coming out soon, "Live Life First," with American Idol's Crystal Bowersox. Song is produced by AI's Randy Jackson.

“Do I wish that I didn’t have Type 1 diabetes? Absolutely,” George told a group of children, teen-agers, parents and young adults at the Animas Caregivers seminar in Glen Allen. “But I also think it is why I’ve been successful. I call it a goal-oriented disease. You set goals and you hit them; and you live your dreams.

“The kids I meet with diabetes are the most-driven kids I’ve ever met. We grow up and take responsibility at an early age. Your diabetes won’t stand in your way as long as you believe,” George said.

Just listen to Jay Hewitt, member of the U.S. National team, on his journey from a first-time marathon runner to a world class athlete, who also happens to have Type 1 diabetes.

“High achievers understand that this is a part of life. Your worst moments can be your best opportunities for success,”  Jay said to guests attending the Insulet/ Omnipod reception on March 15 in Richmond. “Diabetes is the best thing that ever happened to me. Am I saying that I’d rather have it than NOT have it? No. Of course not. But the cure is coming. And until it happens, it’s up to me to stay healthy.

“We drag our diabetes with us each step of every day. It’s a ball and chain. So ‘my diabetes’ better be able to swim because I’m going to drown it. It better be able to ride a bike because I’m going to pound it on the street. I will use every cell, every calorie, every ounce of energy that I have to win my race. And no matter how tired I am when I cross the finish line, I always have enough left to turn around and STEP DOWN HARD ON THE NECK of Diabetes. You must make diabetes the best thing that has ever happened to you. Use it as motivation.”

George and Jay gave positive testimony during their Richmond visits. They are “Profiles In Courage” and I thank them for showing us how to live, thrive and make no excuses. We R not Victims. We R the Cure. I recommend you check out George Canyon’s Facebook Page and Jay’s Finish Line Vision website. Also take a listen to George’s music on his You Tube page.

U.S. National Triathlete Jay Hewitt Keeps A Finish Line Vision

Elite Ironman Jay Hewitt has a Finish Line Vision for his life and his Type 1 diabetes.

I am the newest member of their fan clubs! Stay tuned for more from George and Jay’s visits in upcoming We R the Cure blog posts.

Elite Ironman Triathlete Jay Hewitt Speaking In RIC March 15; You’re Invited To Meet Him

Elite Triathlete Jay Hewitt

Jay Hewitt is the only athlete with Type 1 diabetes to qualify for the United States National Triathlon Team. Photo courtesy of empoweryourhealth.org.

Type 1 diabetes is a chronic disease with real life-threatening complications. But diabetes does not stop us from living, striving and thriving. In fact, the Type 1Ds that I’ve met are a motivated and active bunch of doers. I bet this guy could teach us all a thing or two about winning the race against diabetes?

Elite Ironman Jay Hewitt

Elite Ironman Jay Hewitt is coming to Richmond on March 15. RSVP to Amy Landing now if you want to get a seat. But you'd better hurry! Photo courtesy of Jay Hewitt's Blog.

Jay Hewitt has a vision. He’s driven to complete everything he begins, everyday. Jay is a dynamic speaker, successful lawyer and gifted triathlete. He doesn’t let anything slow him down or keep him from having a positive outlook on life. Not even diabetes. Listen to Jay’s own soundbite:

“I am an Ironman Triathlete, living with Type 1 diabetes since 1991. I started racing triathlons and marathons in 2000, just to prove that diabetes would not stop me. I was not very good, but I was relentlessly determined to get better, beat this disease. I love the pain of the training, the race, but especially The Finish Line.”

Jay Hewitt is the only athlete with Type 1 diabetes to qualify for the U.S. National Triathlon Team and he’s a motivational and inspirational speaker. You are invited to come meet him but you need to RSVP now to get your seat.

When: Thursday, March 15, 2012
6:00pm Reception and Dinner
6:30pm Program with Jay Hewitt

Where: Crowne Plaza Richmond West
6531 West Broad Street Richmond, VA 23230

Act Now!

RSVP by Friday, March 9th
Contact Amy Landing at alanding@insulet.com or (804) 317-4036

 

JDRF Diabetes Research Summit Feb. 18 In Bethesda MD: Are You Going?

T1D Blue Finger Graphic

We are Number 1. JDRF Hosts 2012 Research Summit Feb. 18

Don’t miss this unique opportunity for education and dialogue with leading experts & prominent researchers in the type 1 diabetes field!

In addition to having a variety of influential authors and researchers share their expertise, there will also be a robust exhibit hall featuring the latest in cutting edge technology, resources and research.

When:   Saturday, February 18, 2012

Where:   Bethesda North Marriott Hotel & Conference Center
Located near the White Flint Metro Station (Red Line)
9:00 am – 4:00 pm

Registration and Vendor Exhibits open at 9am. Admission is FREE (with suggested donation), though seating is limited.  Check the summit agenda and register here.

If you have specific questions regarding the Summit, please email jdrfcapitol@gmail.com.


Discovery of Insulin: It’s not a cure, but it sure beats death

This blog is dedicated to a future of high tech products, better treatment solutions and, one day, real cures for persons living with autoimmune disorders like Type 1 diabetes. Before we can look forward, we need to stop and pay our respect to two Canadians and their laboratory dogs!

This month marks the 90th anniversary of the discovery of insulin by Canadian scientists Fred Banting and Charles Best.

As a person with Type 1 diabetes, I owe these men and many other scientists my life. Actually, about 4 million people living today are in debt to these trailblazers.

Fred Banting and Charles Best Discover Insulin

Canadian Scientists Fred Banting and Charles Best Discovered Insulin in 1922. Photo courtesy University of Toronto.

Although it is true — Insulin is not a cure for Type 1 diabetes — imagine the starvation deaths  suffered before the discovery of insulin in 1922. In fact, my favorite diabetes book, “Cheating Destiny,” writer James S. Hirsch tells the horror stories of children and adults living a “disgusting and painful” death from diabetes. In the early 1900s, doctors knew that sugar worsened the condition of diabetic patients and that the most effective treatment was to put the patients on very strict diets where sugar intake was limited.  At best, this treatment would buy patients a few extra years, but it never saved them. In some cases, the diets even caused patients to die of starvation.

“The Greek physician Aretaeus of Cappadocia offered the first accurate account of diabetes in the first century A.D., noting the distinctively gruesome fashion in which some patients withered away. He called their demise, the ‘melting down of the flesh and limbs into urine. Life is disgusting and painful.’ Diabetes’ signature symptom was polyuria or excessive urine. When blood sugar levels rise, the body draws water from its tissues to purge the sugar through its urine.”

This is why children and adults may lose 50% or more of their body weight in the initial weeks of the autoimmune disorder hitting. Your body is, basically, releasing excess sugar AND the food you need to stay alive. In my case, I lost 16-17 pounds in about 4 to 6 weeks before I finally dragged myself to Dr. G. V. Puster for my diagnosis! I made many rushed trips — running at full speed — to get to a bath room. And hoping that I would not wet my pants. It was a hit-or-miss race. Ugh. Fun times.

So, let’s celebrate the discovery of insulin. One of the most revolutionary moments in medicine. Though it took some time to work out proper dosages and to develop manufacturing processes to make enough insulin of consistent strength and purity, the introduction of insulin seemed literally like a miracle. One year the disease was an automatic death sentence; the next, people — even children — had hopes of living full and productive lives even with the disease. Wellcome's insulin Ad in 1923

Now, we stand on the water’s edge. Waiting for the next miracle. If you want to participate in miracles, then you need to get involved in a human clinical trial. Miracles like the artificial pancreas, beta cell regeneration and smart insulin are sitting on the horizon. So don’t wait on the shoreline. Jump in. Become a “research dog.”

Coming up next week, I’ll post details on how to find and enroll in a clinical trial.

Diabetes Costs Money, Takes Lives

Each year, more than 15,000 children and 15,000 adults, approximately 80 people per day, are diagnosed with T1D in the U.S?!

  • Type 1 affects as many as 3 million people in the U.S. alone, and results in nearly $15 billion in healthcare costs each year.
  • Contrary to the misconception: 85 percent of people living with type 1 diabetes are adults. Obviously, a lot of young children have grown up. Now they are adults with Type 1.
  • The average annual medical costs of kids and teens with diabetes is $9,000, compared to $1,500 for those who don’t have diabetes.
  • The rate of type 1 diabetes incidence among children under the age of 14 is estimated to increase by 3% annually worldwide.

And the climax:

  • 1 in 20 people, an estimated 2-4 percent and 6 percent in patients younger than 40 years old, will die from severe hypoglycemia.  That’s having a low blood sugar that produces seizures, coma and death. Of the estimated 3 million people in the U.S. with type 1 diabetes, that’s approximately 150,000 people. That’s like wiping out Chattanooga, Tenn. or Rockford, Ill. — wiping them right off the map.
  • So, that’s why we push the FDA, our family, friends and total strangers — for greater awareness and more money. We need better technology, new solutions and real Cures. The future’s so bright, we gotta wear shades. But if you’re living with diabetes, it’s not coming fast enough. Will you help?  We R the Cure.

We R The Cure — We R The World

Friends and Family Supporting We R The Cure

There comes a time when we heed a certain call
When the world must come together as one
There are people dying
And its time to lend a hand to life
The greatest gift of all

We can’t go on pretending day by day
That someone, somehow will soon make a change
We are all a part of Gods great big family
And the truth, you know,
Love is all we need

[Chorus]
We are the world, we are the children
We are the ones who make a brighter day
So lets start giving
There’s a choice we’re making
We’re saving our own lives
It’s true we’ll make a better day
Just you and me

Send them your heart so they’ll know that someone cares
And their lives will be stronger and free
As God has shown us by turning stones to bread
So we all must lend a helping hand

When you’re down and out, there seems no hope at all
But if you just believe there’s no way we can fall
Let us realize that a change can only come
When we stand together as one

We Are The World
Writers: Michael Jackson, Lionel Richie