We R the Cure

Seeking Cures and Cheating Destiny


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Turning Type 1 Diabetes into Type None: I’m wearing biker shorts (Ugh) and riding for a cure

Hello Friends and Supporters of Type 1 Diabetes research!

JDRF Ride to Cure Diabetes

Why do we ride? We ride to raise research funds so that Daniel Majikes, left, has hope for a brighter future and a real cure for Type 1 diabetes. Daniel and I will ride together in Vermont on July 26.

I’m taking part in the JDRF Ride to Cure Diabetes in Vermont this July, along with hundreds of riders from around the world, to raise money for JDRF, the leading global organization funding type 1 diabetes (T1D) research. My training is designed so I can ride up to 100 miles on a bike — I’m not a cyclist but I am a biker with a mission.

So far, I’m up to 29 miles of weekly bike training and heading toward a busy July riding the back roads of Goochland County — which is a beautiful area to ride. As Jackson Browne sings, “Looking at the road rushing under my wheels … Running on Empty … but I’m running on.”

Click here to visit my personal page.

I received my Type 1D diagnosis — from out of nowhere — in May 1998. That is 16 years this May 2014. It’s been a real up-and-down journey since that unfortunate starting line when my fasting blood sugar was 500+ as I sat in the exam room at Chester Family Physicians.

Today, 16 years later, I count only my blessings for all the good things that have happened to me on my journey to a cure. It’s the Type 1D people — Drew, Lauri, Daniel, Linda, Matthew, William, Susan, Fred, Tony, Kevin, Patti, Trish, Shea, Sarah, JP, Liesl, Molly, Mary, Laura, Boris, Danny, Sue, Stacy, Nicole, Kathy, Ned, Chris, Eva, Cecil, Cheryl, Larry, Melanie, Kim, Hillary, Doran, McKenzie, Sandra, Connie, Kailee, Nathan, Tom, Kim, Tiffany, Andrew and all my fellow JDRF volunteers too numerous to list — that’s why we ride.

We do ALL this for each other. We do it for ourselves. We do it for our friends and loved ones. We do it for my aunt Mary Jane, a Joslin Medalist who’s lived with Type 1 Diabetes for 70+ years and is still kicking – despite having both feet amputated due to diabetes complications. And we do it for the next generation of children and adults who have not been diagnosed yet.

Today, I’m making my biggest commitment yet. I have joined Coach Matthew Majikes and the Central Virginia Ride to Cure Diabetes team. Our goal is simple: To train together as a team, enjoy our time together, and cycle up to 100 miles in Burlington, Vermont July 24-27 to raise awareness and dollars for research that will improve the quality of life for children, teens and adults living with this chronic disease.  And one day soon — our efforts will generate a quality of life cure like the Artificial Pancreas and the ultimate goal, a medical cure that reverses or stops Type 1 diabetes in its tracks.

Will you help me on my road to a cure?

JDRF is working every day to fund critical diabetes research. And every dollar I raise helps them continue to bring life-changing therapies from the lab to the community until a cure is found. I’m  entering my second month of training on my bike. Please check back to view my fundraising progress as my Ride weekend approaches.

Can you make a donation of $25, $30 or more today? Your support, both financially and emotionally, is greatly appreciated. Please consider making an online donation today. Thank you. Together, We Are The Cure.

Mike Anderson

Click here to visit my personal page.


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D-Blogweek Post 2: He’s a poet and don’t know it — For Whom the Bell Tolls

Yesterday was Poetry Day for Diabetes Blog Week. So, I’m playing catchup already.

Click on the #Dblogweek buttoin

Diabetes Blog Week — Click to find out more details.

Instead of  trying to be a poet, I think it’s wiser to reprint something that fits a certain viewpoint — how Type 1s are living with a chronic disease that ticks, ticks, ticks in the back of our mind. Healthy looking on the outside, not so healthy on the inside.  Seeking Cures and Cheating our Destiny.  And raging against the machine.

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

These famous words by John Donne were not originally written as a poem – the passage is taken from the 1624 Meditation 17, from Devotions Upon Emergent Occasions and is prose. The words of the original passage are as follows:

John Donne
Meditation 17
Devotions upon Emergent Occasions

“No man is an iland, intire of it selfe; every man is a peece of the Continent, a part of the maine; if a clod bee washed away by the Sea, Europe is the lesse, as well as if a Promontorie were, as well as if a Mannor of thy friends or of thine owne were; any mans death diminishes me, because I am involved in Mankinde; And therefore never send to know for whom the bell tolls; It tolls for thee….”


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Should Type 1 Diabetes Advocates Have Sharp Elbows? Status Quo or Act Up — What is the right pathway?

What does advocacy mean? Is someone who advocates for a cause they believe in — not to be confused with a paid advocate — actually able to make things better, to make change happen at a local, regional or national level? Well, it’s time to find out.

Image for Diabetes Advocates

I am a new member of Diabetes Advocates. Excited to be an advocate. What can we achieve together?

I did not prepare a speech, but I am very honored and excited to have my membership application accepted by the Diabetes Advocates non-profit group. Thank you to the Academy!

The question for me to answer is — how do I actively participate and how do I add my time and voice to the growing chorus of Diabetes Online Community (#DOC) leaders who are real people, not actors on TV, who wake up each day with Type 1 Diabetes and envision a better future for themselves and the next generation of Americans who get this game-changing diagnosis. The DOC has done great things for all of us connected to diabetes.

Are we advocates or practical agitators. Or something in between? The recent article in Insulin Nation about The Juvenile Diabetes Cure Alliance (JDCA) — Practical Cure Advocates — should make all of us stop and think. What change do we advocate for? If we want more human clinical trials, higher-tech technology and a medical cure for Type 1 diabetes — it’s up to us to make it happen.

“Scientists have made careers in proving a concept in mice…we want to push against that gravitational pull” of mouse-only research, Phil Shaw of the JDCA told Insulin Nation.

I’ve been a volunteer and fundraiser for many years with the Juvenile Diabetes Research Foundation — the Central Virginia Chapter. Thru my volunteer work I’ve met some incredible children, teens, adults and selfless parents — and developed friendships with some of the best people I’ve ever met — the people you wish you never had the good fortune to meet. I’ve also been a participant in and an advocate for human clinical trials, and I see how the money raised for Type 1 research does make a difference in our daily lives. However, no matter how hard we all push, we’re still waiting for  better tech, better solutions and a future free from Type 1.

For today, it is my honor to be a new DA and to proudly post the group’s goals. Tomorrow is a new day. Together we are stronger.

Diabetes Advocates is a program of the Diabetes Hands Foundation, a nonprofit organization that brings together people touched by diabetes for positive change so that nobody living with this condition ever feels alone.

Mission
To connect advocates dedicated to improving the lives of people living with diabetes in order to accelerate and amplify their efforts

Goals 2013-2015
1. Continue growing the reach and impact of the program, by:

  • Creating paths for diabetes advocacy for members of the diabetes online community.
  • Increasing the number of Diabetes Advocates members focused on type 2 diabetes.
  • Increasing the number of Spanish-speaking Diabetes Advocates members.
  • Increasing awareness about Diabetes Advocates, starting with an emphasis in the US.

2. Increase the measurable impact of the program through:

  • Increasing member engagement in Diabetes Advocates initiatives.
  • Expanding benefits that impact sustainability and member development.
  • Hosting an annual Diabetes Advocacy Congress.
  • Consolidate Diabetes Advocates as a hub for collaboration among diabetes advocates.


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Mathematics, Mary Tyler Moore, and Standard Deviation, Oh My! We’re Gonna Make It After All

The headline, I hope, made you stop and wonder. Math. Mary Tyler Moore. Standard Deviation? Three random sounding topics that actually have one thing in common: Living with Type 1 Diabetes, of course.  The balancing act is the perfect excuse to republish some of Mary’s best quotes — about her battle with the disease — on our complicated journey toward better health and cheating our destiny.

We R the Cure blog and photo of Mary Tyler Moore at JDRF Childrens Congress 2009

Mary Tyler Moore greets President Obama during the 2009 JDRF Children’s Congress event in Washington. DC. She is flanked by her husband, Dr. Robert Levine, and boxer Sugar Ray Leonard.

“Both children and adults like me who live with type 1 diabetes need to be mathematicians, physicians, personal trainers, and dietitians all rolled into one,” Mary has told members of the United States Congress during JDRF’s Children’s Congress. “We need to be constantly factoring and adjusting, making frequent finger sticks to check blood sugars, and giving ourselves multiple daily insulin injections just to stay alive.”

I also know that a photo — or in this case a You Tube video from @Blogdiabetes friend Tony Rose — is also worth a 1,000 amazingly insightful words from me, the CEO, Editor-In-Chief of “We R the Cure.com.” Right? As I learned in Journalism 101, it’s time to get to the “So What?” or “hook your audience now” or lose them forever sentence.

After living and dying in three-quarter time with Type 1 diabetes for 15+  years, I’m actually beginning to figure out how much effort, dedication, cool technology and sheer luck it takes to “control” my blood glucose. The answer: It takes every waking second of every day, and that still does not guarantee an A1C less than 7 or eliminate the rollercoaster blood glucose ride. I love coasters, but the more you learn about this crazy,  chronic disease, and the harder you work to control it using insulin pumps, meters, CGMs and Apps — It still winds up controlling you most days.

For the past 4 months, I’ve been religiously wearing my new DexCom 4 Platinum CGM — which I love. And, as the images here will show — my standard deviation has dropped from 68 to 58 and is approaching the 50 reading which, according to Laura Adams, Certified Diabetes Educator with DexCom, is the number persons with type 1 diabetes (PWD) should aim for when seeking to control their glucose. In fact, Laura says a standard deviation reading between 50 and 40 on my DexCom ” Studio” reporting App should be the target. Fortunately, calculating the SD number is done automatically by the App based on my CGM numbers. They’ve taken the math out of my hands.

In Part 2 of this blog story, we’re going to dive deeper into the math and determine if standard deviation, A1C or something called “Glycemic Variability” is the true “gold standard” of BG control?

For now, I’ll leave you with these positive trendlines from DexCom App, which does not sync up with my insulin pump App (Diasend) — but that’s another story. Let’s call this my starting point as I aim for better control with the goal of reducing the possibility of serious health complications such as blindness, heart disease, stroke and amputations. I am in charge of my own cure, and getting better control of my numbers is the key.

The good news: My numbers are getting better thanks to technology, effort and some luck. The sobering news: this is a 24/7 battle and there’s never ever a day off.  Don’t take my word for it, take it from my Type 1 best friend, MTM:

“Chronic disease, like a troublesome relative, is something you can learn to manage but never quite escape,” Mary explains on JDRF.org’s website. “And while each and every person who has type 1 [diabetes] prays for a cure, and would give anything to stop thinking about it for just a year, a month, a week, a day even, the ironic truth is that only when you own it — accept it, embrace it, make it your own — do you start to be free of many of its emotional and physical burdens.”

We’re gonna make it after all. We R the Cure.


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Type 1 Diabetes and Pizza: Two Topics That Don’t Taste Good Together — Unless You Read This Post

In my blogging about Type 1 diabetes, I’ve tried to avoid commentary about how difficult daily life can be for PWDs ( That’s People With Diabetes).  We R The Cure is focused on how and when we’ll have cures or solutions that improve our quality of life. However, for the next two posts, I’m going to break my own rule and talk about a subject that everyone loves — Eating Pizza! That’s right, we’re talking hot, cheesy pizza with all your favorite toppings.

Pizza and Diabetes

Everyone Loves Pizza; But The Saturated Fat and Carbs Equal Trouble For Persons With Type 1 Diabetes

Well, most PWDs struggle with this tasty food. For me, I try to eat 1 slice and no more. This is my blog so I can tell you the truth, right? Recently, I stumbled over this awesome blog post by  Rich the Diabetic  and the light bulb came on. I don’t think I’ve seen the ” blood sugar ” roller coaster explained so well.  So, with ALL credits given to Rich, here is some great advice on how to balance pizza and type 1 diabetes. All in moderation. Thank you Rich!

Diabetes and pizza.  Hmmmm?  If you have diabetes, and you love pizza, you’ve probably experienced the blood sugar roller coaster that occurs after you’ve filled your tummy with as much as it can stand without exploding.  (Everybody’s done it!)  Over the last week or so, for some reason, pizza has come up in conversation with many of my diabetes peeps. Then today I read this neat story at www.sixuntilme.com about pizza, and I figure this is the universe telling me to blog about it.

I love pizza, but I don’t eat it, partly because I don’t have the math skills to figure out the bolus required for eating pizza.  Here’s what typically happens to diabetics that don’t yet understand pizza and diabetes.  Let’s say you eat 4 slices of pizza, and you start with a normal blood sugar of about 100 mg/dl.  4 slices is approximately 100g of carbs.  Notice I said approximately.  You never really know how many carbs are in each piece for a bazillion reasons.  (It’s a word.  It’s MY word.)  So you bolus for 100g carbs.  Between 1 and 2 hours later, you crash hard.  Your blood sugar is like, . . . in the 50′s.  So you eat what you’re suppose to, exactly 12 carbs, and you check, and your blood sugar is around 80 mg/dl.  Then 2 hours later it’s 270!  WTH?!

Here’s what happened.  The high saturated fat content in the cheese caused temporary insulin resistance, slowing down the initial blood sugar spike, AND hours later it causes your remaining bolus and your basal to be less effective  So you bolused for 100g, and since the fat slowed down the carbs, your blood sugar didn’t rise as quickly as it would otherwise, but your insulin still did it’s job, so you crashed.  Then you corrected at about the same time that the fat is causing insulin resistance, so you’re rising from your correction, AND you’re rising from the insulin resistance.  This can last for hours.

Now if you didn’t know this, don’t feel bad.  I only learned about saturated fat’s effect on my blood sugar and diabetes last year.  I have my CDE (Certified Diabetes Educator) to thank for educating me on this.  Have I mentioned that she’s amazing?  Now that I understand this, I have a lot less “unexplained high blood sugars”.  Below is how I deal with high saturated fat meals.

First, don’t just try this without first consulting your endo or CDE, because saturated fat doesn’t effect every diabetic the same way.  I’m just sharing what I do.  So here goes.  This first bit is VERY IMPORTANT.  When my meal has more than 25g of saturated fat, then I increase my total bolus amount by around 25%, BUT I  DON’T TAKE IT ALL AT ONCE.  I take 40-60% of it with my meal, and then I take the rest of it in a dual-wave bolus set for 4 hours.  That usually works for me, but you have to fine tune it every time depending on how much carbs, and how much saturated fat you eat in a meal.  When you’re meal has less than 25g of saturated fat, it’s less likely to affect you this way, so if you only eat 2 pieces of pizza, you don’t usually have to bother with this, but again, it’s different for everybody.  (I know, to many commas.  I don’t care. It’s my blog! *grin*)

I actually don’t eat pizza anymore because I try to follow the paleo lifestyle most of the time.  However I do eat large amounts of saturated fat every once in a while, so I still have to deal with this.  It’s been so long since I ate pizza, that I honestly can’t even remember the last time I had it?  Some diabetics will say pizza is horrible and you shouldn’t eat it, some will say anything is ok in moderation, and others don’t limit themselves and enjoy what they like.  Whatever you choose, I hope this blog helps you understand pizza’s effect on your blood sugar.


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What Does It Feel Like To Test Your Blood Sugar 8 Times Every Day: My Day of Finger Pricks

A few years ago, a child under the age of 9 years presented this to a room full of adults at a JDRF fundraiser in Richmond, VA. Her concise and beautiful talk captivated the room. It says a lot about the daily grind of a child, a parent caring for a child, or an adult living with Type 1 diabetes. More than 3 million Americans face this daily Type 1 D drama in order to stay alive.

Finger Pricks

Try this. What does it feel like to test your blood sugar or take an insulin shot — 8 times a day.

As 2012 ends and 2013 begins, it’s time to energize We R the Cure. Here’s my starting point.

I encourage you to try this simple yet realistic “day in the life” of a person living with diabetes. To feel what it’s like to test your blood sugar like me, put a rubber band around your wrist and snap it each time you see my handprint or needle. Eight times or more a day.

  1. I woke up low at 2 AM. Mom had to check me. Finger Stick.
  2. Check before breakfast and my first shot.
  3. Gym today. The nurse checks me before I can participate.
  4. Mom or I check before lunchtime. Finger Stick. Shot.
  5. Soccer practice after school. Finger Stick.
  6. Suppertime. Finger Stick. Shot.
  7. Before Bedtime. Finger Stick. Snack or Shot.
  8. Bedtime. Finger Stick. Snack or Shot. I am OK.


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The Doctor, The Patient and the Healing Power of a Story; Elsa K and Dr. Vinik Create Change Together

A young lady, 22, found out that she had type 1 diabetes during a second visit to her new dermatologist. The doctor didn’t like the way she looked and ordered some blood work. While looking at the results, he commented; “You do know you’re diabetic, right?”
Elsa K and Doctor Achieve Positive Diabetes Results

Elsa K, right, travels with her friends during school trip abroad. She calls Dr. Vinik, her new diabetes doctor, a “genius.”

Unfortunately, this was news to her. She has a younger sister with the disease and understood some of the ramifications of this diagnosis from growing up and watching her sister live with this disease. However, observing diabetes is much like being a passenger in a car; taking the wheel is an entirely different experience!

She had just started her first job out of college three months prior to the diagnosis. She was beginning her adult life and living away from home in New York. She began seeing an endocrinologist to learn about the day-to-day challenges of living with diabetes. She struggled mightily to achieve a decent A1C. Her first doctor was kind and then angry and then threatening. Another, also kind, said, “Just get your blood sugars under control and everything will be fine.” Each of these docs was a good doc but not what this young lady needed to facilitate making positive changes.

Enter Dr. Aaron I. Vinik, Professor and Vice Chairman for Research, Eastern Virginia Medical School in Norfolk, Va. He spent a great deal of time interviewing her during her first visit. Having been exposed to a number of endocrinologists, it was notable that he did not want to look at her meter, pump and logs first. For a patient who felt she was failing, this may have been the first step in being able to be completely honest with her doctor.

Dr. Vinik impressed her as a sharp, direct, knowledgeable doctor with a sense of how large a role the mind plays in successful diabetes management. He didn’t criticize or recommend she “just get her blood sugars in order.” He listened first and provided reassurance. He offered suggestions, a plan, and guidance in a manner that set little goals that were manageable. He had high expectations but was wise enough to know the results would come in time. He helped positive changes happen for a young woman ready to give up.  He also provided a sense of “we have your back” as well as small, manageable steps toward the end goal of better glucose control.

How did he create change for this young lady? He is kind, patient, a great listener, and an astute observer of human behavior. He conveys much with words and more with his demeanor. He teaches by telling a relevant story. It is hard to admit your fears to anyone, particularly a doctor you barely know. On her third visit to Dr. Vinik, she was comfortable enough to admit that she had an outsized fear of low blood sugars. Not even her family was aware of this fear. Dr. Vinik shared a story that helped her put this fear in perspective. He told her of the miners he treated in South Africa early in his career. They were paid on Friday and then drank strong, rotgut type of alcohol all weekend. The diabetics among them would end up sick in the Emergency Room with Dr. Vinik on Monday mornings. Often they would have a blood sugar of 20. He said the men were conscious and still talking with a blood sugar that low because they were used to it. Not that he was advocating going that low! However, he deftly used this story to put her fear into perspective. She thought of it often, as she trusted him regarding her pump settings and experienced some lows. His words gave her courage. His wisdom gave her the strength to push forward and achieve success in managing her diabetes. He helped her lower her A1C by 3 points.

As she often says; “he’s a genius!” Every patient in his care is so very fortunate.  We are forever grateful to Dr. Vinik and the healing power of a simple story.

By Maryann Kaminsky
Proud Mother of Two Type 1D Daughters

The EVMS Strelitz Diabetes Center (SDC) in Norfolk, Virginia, is comprised of a renowned international team of endocrinology experts – clinical providers, scientists and educators – working to find the cure for diabetes and to prevent the debilitating complications of neuropathy and cardiovascular disease.


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Another Eyewitness Testimony; Lesley Berchtold Tells About Her UVA APP Trial — She Is the Cure, Too!

The future of improved diabetes control is coming fast; it’s kinda like the small light at the end of the tunnel. The light is a freight train carrying the Artificial Pancreas Closed Loop solution currently being tested and in trials at the Center for Diabetes Technology at the University of Virginia and 4 other leading universities in the world.

Artificial Pancreas Mobile Technology

One of the possible “brains” that will safely power the Artificial Pancreas Closed Loop system via an ordinary “smart phone.” Once in use, the quality of life and health improvements will be amazing for Persons With Diabetes (PWD).

With Full Disclosure and Much Credit — Here is a recent Podcast done by my friend, Tony Rose, who is a veteran contributor to the Diabetes Online Community (DOC), a fellow PWD and someone I called when I was starting Werthecure.com  this year.

“In this episode of the Blogging Diabetes Podcast I talk to Lesley Berchtold about her history with diabetes and more recently, her in and out patient trial at UVA for the Artificial Pancreas. It was an eye opening interview that I certainly learned a lot from and appreciate Lesley talking about her experiences,” Tony blogged earlier this month.

If you’ve got feedback, comments on the APP or wish to “blog” about something in this space — let me know. It’s an open forum for Type 1 diabetes, research and clinical solutions and for the people who are living and thriving with this chronic disease. We R the Cure.

Next Month:  How to react positively to a bad A1c report.


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Diabetes Hands Foundation Announces 2012 Recipients In Micro-Grant Program: Connect, Educate, Empower

Diabetes Hands Foundation Announces Winners Seeds Micro-Grant

DHF announced August 1 the nine innovative diabetes advocacy projects selected to receive DHF Seeds grant funding for 2012. Each of these projects, aimed at connecting, educating or empowering people touched by diabetes, will receive US$2000.

“Our goal is to support promising projects and help advocates through grants that assist them in taking their projects to the next level,” explains Manny Hernandez, president and founder of the Diabetes Hands Foundation. Here is a complete list of the recipients of the 2012 DHF Seeds grant.

Category: Connect

College Diabetes Network Chapter Toolkit
CollegeDiabetesNetwork.org 

The College Diabetes Network (CDN)  is a student-led network aimed at empowering college students with Type 1 diabetes through peer support and access to information. CDN will use the grant to help build chapters faster and more effectivley on 45 campuses nationwide by publishing and distributing a hands-on chapter leadership toolkit.

World Diabetes Day Postcard Exchange
www.wddpe.com

Led by diabetes advocate, blogger, and art therapist Lee Ann Thill, the World Diabetes Day Postcard Exchange marks World Diabetes Day (November 14th)  by coordinating the exchange of homemade postcards that promote healing through creativity, connection, and activism. The DHF Seeds grant will be used to underwrite the work and supplies needed to manage this international event.

You Can Do This Project
YouCanDoThisProject.com 

Created by diabetes advocate, blogger, and cartoonist Kim Vlasnik, You Can Do This has, to-date, broadcast videos from over 90 people. Each person tells his or her own diabetes story and encourages others living with diabetes that they too “Can Do This.” The DHF Seeds grant will be used to broaden participation in this ongoing online project that connects people touched by diabetes.

Category: Educate

Drinking with Diabetes
www.YDMV.net and www.theBetesNOW.com 

The Drinking with Diabetes guide is aimed at fostering healthful choices and a dialog about alcohol and diabetes between students and their families. This guide will discuss the health implications of drinking alcohol for college students living with diabetes. And it will help students make better choices. The DHF Seeds grant will be used to support the production and distribution of this guide.

LIFT – Levántate!
www.LiftForTeens.org 

LIFT – Levántate! is focused on engaging low-income and at-risk youth and adults in managing diabetes with diet and exercise. The DHF Seeds grant will be used to extend bilingual family support for people with diabetes in low-income communities.

The Sweet Lowdown – Broom Street Theater
BSTOnline.org

The Sweet Lowdown, a live theater production,  will use music and dance to demonstrate the science of how diabetes works and as a powerful way to educate people and destroy myths about diabetes. The DHF Seeds grant will be used to develop and produce this play at the nation’s oldest thriving experimental community theater—The Broom Street Theater in Madison, WI.

Category: Empower

Riding on Insulin, UK
www.RidingOnInsulin.org 

Led by pro-snowboarder Sean Busby, who lives with Type 1 diabetes, Riding on Insulin camps teach snow skills and diabetes management to children and teens living with Type 1. The experience shows families that anything is possible—even with diabetes. The DHF Seeds grant will support conducting a Riding on Insulin camp at an indoor snow-site in London, expanding the reach of this successful camp program.

Rumor Mill
OurWisdomShared.org

Rumor Mill will be a graphic novel aimed at inspiring and informing teens living with Type 1 diabetes. The plot explores how a teen can respond constructively when the very action he must take to maintain his health (i.e., injecting insulin) is misunderstood, mislabeled, and become grist for the rumor mill. The DHF Seeds grant will support the writing, production, and distribution of this graphic novel.

Sweat-Betes
www.Living-In-Progress.com

Developed by Ginger Vieira, a Certified ISSA Personal Trainer, Certified Cognitive Coach, and diabetes blogger, Sweat-Betes will be a series of exercise videos aimed at people living with diabetes. These videos, developed for people with beginner-to-intermediate levels of fitness, will present sound, medically-based instruction and information on how a person with diabetes can exercise safely. The DHF Seeds grant will support the production of this specialized  series of exercise videos.

You can view the submission videos for all of these funded projects at https://vimeo.com/channels/2012dhfseeds


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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.”

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