We R the Cure

Seeking Cures and Cheating Destiny


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My Aunt Mary Jane: After 70 years of struggle, she’s still “kicking” back at Type 1 diabetes & cheating destiny

Every picture tells a story.  Yet it doesn’t tell the full story — especially when a chronic disease like Type 1 diabetes is lurking below the scene.  Over the next few months, I’d like to tell some summer mini-stories dedicated to my Aunt Mary Jane, who recently celebrated her 80th birthday with a party in Nellysford, VA.

If anyone lives to the age of 80, they’ve overcome a lot of odds. If you add a Type 1 diabetes diagnosis at age 7,  a complete lack of any blood glucose testing systems, and throw in four children to raise,  and you’ve got a lifetime challenge. Mary Jane tells me diabetes took over her life one day when her sister, my mother – Cecilia, and her younger brother– John, came home from preschool with the mumps.

Aunt MJ2_Birthday

My Aunt Mary Jane Dull Hoffman, center, is celebrating her 80th Birthday in April at her homeplace in Nellysford, VA with two of her “favorite” nephews, Phil and me ( Front Right). We are joined by my wife, Lisa, my children Cecilia and Nathaniel, and Phil’s daughter Sammie.

“I’d rather they brought me the mumps, instead,”  said Mary Jane. “They got over the mumps in a few weeks. That virus is what cause me to have diabetes for a lifetime. That’s my biggest gripe with diabetes:  it’s too much to do. Do this, do that…Every day it’s something else to do. I’ve done a lot of it by the seat of my pants.”

And then Mary Jane smiles:  “Since I don’t have my feet anymore, it’s a good thing I’m flying by the seat of my pants most of the time.” After you stop laughing at the irony of a T1D who is a Joslin Medalist honored for “surviving ” diabetes, you see clearly what diabetic complications really mean. Feet are gone. And she’s the lucky one.  And then you realize: Diabetes continues to suck and if I don’t manage my Type 1 like a mad man — I could lose my feet and a lot more.

Here’s my goal in highlighting Mary Jane’s story:  To show that surviving Type 1 diabetes requires effort, luck and stubborn commitment to each day being better than the day before. In order to beat diabetes — which we have not done yet — a person also needs a healthy dose of  kiss-my-butt craziness.  When you’re sick on the inside but you look perfectly “healthy” on the outside, it’s not easy to generate a sense of urgency for more research, more awareness, and more money.

My other goal here:  To announce that I’m riding again in the JDRF RIDE FOR A CURE at Amelia Island, FLA on Oct. 30, 2016 and that all the money I raise — thanks to all my compassionate supporters — will go to JDRF and its support of Dr. Boris Kovatchev and the researchers at the Center for Diabetes Technology at the University of Virginia. The CDT team in Charlottesville is part of a five member university consortium still trying to bring an Artificial Pancreas System to reality. Funds raised support worldwide human clinical trials required to convince the FDA that it’s time to approve an AP or a bionic pancreas which will deliver better glucose control and fewer serious medical complications to persons living with T1D.

(I will add a blog update on my current participation in the ” Project Nightlight” Home AP trial — 3 weeks are done and the closed loop is working exactly as advertised — nighttime under control.)

I’m not a young man any more — so it comes down to this:  My marathon journey for a cure has become a sprint to the finish line. It’s like the riding the final stage.  Aunt Mary Jane was promised a cure when she was first diagnosed in the 1940s.  Seventy years later, the promises are still being made and we’re still pedaling up hill with our real and artificial feet!

Aunt Mary Jane and I may not cross the ultimate finish line — A cure to Type 1 diabetes without tech solutions, but we want to be counted as two people who tried to make it happen. Together, We R the Cure.


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Seeking Cures, Cheating Destiny: “It’s Time to Wake Up and Smell the Cure — We R the Cure”

“We are the world, we are the children, We are the ones who make a brighter day, So let’s 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 … We R the Cure!”  

Mike Anderson Ride to Cure Type 1 Diabetes Photo

Yes, I’m riding again to cure diabetes with JDRF. Training has started. Our Central Virginia Chapter Team is riding Oct. 31, 2015  — Halloween Saturday — in Nashville, TN.

The signs are obvious: It’s time for a blog Comeback. Easy to say, hard to do. However, blogging is more about therapy and communication than about setting social media records. I am a proud member of the #DOC — Diabetes Online Community, and I am an advocate for better health care through research and technology. I am sorry I’ve been a dark page recently, but the good news is I am not a diabetes statistic today. I am one in 3 million Americans — an achiever battling against the odds and celebrating each day without complications.

Last week, I had the privilege of meeting Sebastien Sasseville for dinner in Richmond. I will post by recap of that chance encounter. In a nutshell, Sebastien is amazing and inspiring. Covering nearly 7500 km from coast to coast and completing the equivalent of 180 back-to-back marathons, Team Novo Nordisk triathlete Sebastien Sasseville ended his epic run across Canada in Vancouver, British Columbia on World Diabetes Day in November 2014. Sebastien ran his final kilometers into historic Stanley Park, reaching the shores of the Pacific Ocean after nine months on the road battling rain, sleet, ice and snow, and more than 30,000 feet of climbing through the Canadian Rockies. Stay tuned for my story on Sebastien.

In the past few months, I’ve also done a limited outpatient clinical trial with my friends at the University of Virginia’s Center for Diabetes Technology (CDT).  I see more trials coming on the near horizon and I’m hoping to participate  with Dr. Boris Kovatchev and his awesome team at UVA. Stay tuned for more updates on UVA CDT trials and news from across the globe.

In closing,  I’d like to reprint an excellent excerpt from Kerri Sparling’s book — “Balancing Diabetes.” It summarizes the paradox of living with #T1D — healthy looking on the outside, dying on the inside. If you don’t know Kerri Sparling — you gotta check her out online. She’s amazing.

Finding Balance and Moving Forward

“It’s a delicate balance, this one between “I’m sick” and “I’m fine.” … On an average day, diabetes falls in the “annoying but tolerable” category. … But on some days, diabetes falls into the “eff you and the effing islet you refused to ride in on” category.

“You seem fine.”  I am fine. I think? I have a chronic illness — a disease — that compromises the function of my pancreas to the point where I need synthetic insulin daily, and even with dedicated management, I may see serious and debilitating complications in my lifetime. That’s part of the dance — feeling and seeming fine and actually being fine, even though my body is dealing with something serious every moment of EVERY DAY.”

“Diabetes means living life on that seesaw. Some days you are way up high and other days have you almost in the dirt, both literally and figuratively. .. I can’t let myself hate it because it is a part of me.  A part that I work so hard to maintain.” Thanks Kerri. Your book is an inspiration.


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Turning Type 1 Diabetes Into Type None: Mad Men, Women and Youth Cycle Hundreds of Miles For Each Other

CVA Ride to Cure Team Lines Up for Tune Up

The Central Virginia JDRF Ride to Cure team lines up for the tune-up ride before the Ride Day. We’re sporting our Pink and Green designer Hincappie jerseys. Real Bikers wear Pink! What a great team!

BURLINGTON, VT — This is a story about a boy, his bicycle, and his deadly disease. The story opens with this boy standing somewhere at the top of a rolling Vermont hillside on a beautiful, chamber-of- commerce-picture-postcard day near Lake Champlain in upstate VT.

Mike Anderson Ride to Cure Type 1 Diabetes Photo

First  JDRF Ride. On the training ride 1 day day before the big day, I’m letting my donors know that they are Number 1 with me. Thanks. We did this.

The view, the 70 degree temps with a slight breeze, and the sense of success  are amazing. And so is the damn flat back tire — My third in 17 miles! But that’s another story for another post.

Key words in this compelling narrative: the boy is standing at the “TOP” of the “hillside” with a “Disease.” This story, however, is not about a disease and getting sick. It is about beating that disease. Stomping on it. Tearing out its heart. Reaching inside and pounding that disease up and down into the pavement of Burlington. Boy, does it feel good to have done that!:-)

The story is my story.  This is also  the story of our Central Virginia JDRF Ride to Cure Diabetes team from Richmond. Eleven strong riders and 1 amazing team supporter — Ellen.

Most importantly, the story is about almost 300 mad men, mad women, youth, friends, family and new friends who came together on July 24-27 in Vermont to prove to each other and to themselves — that there’s NO Quit in Type 1 people.

Type 1 people are compassionate and unwavering in their quest to turn Type 1 Diabetes into Type None for the 3 million Americans living 24/7/365 with this unfortunate chronic killer.

In one weekend, this amazing group of human beings rode hundreds and hundreds of miles and raised more than $850,000 — THANKS to our AMAZING SUPPORTERS — to fund the clinical trials and research being done now by scientists who are peddling the pathways to a cure and new tech solutions.  Our Type 1 group doesn’t ride any “Yellow Brick” Road.  This is not a fairy tale. We know the road to a cure is a long, winding, steep, unfair, depressing, fearless, and physically demanding climb. Yet, we all keep coming back for one more climb each day.

I had one of the best times in my life. Met a new, formidable challenge and loved almost every minute as I delivered a whipping to Type 1.  Actually, that’s what Type 1s do every day.

Here is my Top 10 things learned about Riding to Cure Type 1 Diabetes that I posted on my Twitter page @werthecure  in the days leading up to July 26. A few more stories and key T1D takeaways — i.e. why does my Liver make its own sugar and dump it into my blood stream when I don’t want it to do that? — will be posted in future blog posts here.  Thanks for reading and engaging.

And the Burlington VT Vimeo is worth a thousand words, too.

Top 10 things I’ve learned training 4 @JDRF_RIDE

Num1A: Cycling is tough enough. Try wearing a corset. T1D, Insulin Pump, CGM
Num1: My CVA teammates R amazingly super. $50K for #T1D #burlington
Num2: U can ride, eat shotbloks, check BG and chew gum at the same time. #notafraidtofall
Num3: Must have good bike. It’s even better if #TeamMajikes has 2 U can borrow! #thankful
Num4: Cycle 2+ hours. Manage BG Carbs in route. Post-ride BG stays below 70. WTF #T1D crazy
Num5: Cycle 2+ hours. Manage BG in route. BG may soar 300 post. Liver needs more carbs?
Num6: Pick a scenic training route. Luv #Goochland , Miller Lane & touching 9-11 Memorial
Num7: Don’t leave home without your #Dexcom4 It is a must have tool. @JDRFCVC
Num8: Quality bike shorts and ButtR cream. Nuff said.@JDRFCVC
Num9: A good coach is critical.@JDRFCVC has 2 great ones Matthew and Lisa. See Number 1.
Num10: Wearing biker shorts in front of others. A Profile in Courage


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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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D-Blog Week is back in 2014; Goal is to connect, share our hopes, and change the Diabetes World

For the 5th year in a row, diabetes online writers from all over the world will be participating in a solid week’s worth of informative, educational, and inspirational blog posts. To find out everything you need to know about Diabetes Blog Week, click on the button to the right.

Click on the #Dblogweek buttoin

Diabetes Blog Week — Click to find out more details.

Can you join a blog party that’s already been going on for 5 years?

Yes, I’m going to jump in for the first time ever this week. That’s 7 blog posts in 7 days. OMG.  Let’s get the party started.

Today’s topic: Change the World – Monday 5/12

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

Changing the world?

A few years ago, I won’t say how many, a very “Zen” co-worker of mine was fond of quoting inspirational slogans to inspire team members to overcome our every day, routine work challenges. At the time, my personal guru was a very non-Zen spiritual leader named Vince Lombardi, legendary head coach of my Super Bowl champion Green Bay Packers.

Needless to say, we didn’t have a lot in common. Funny thing, two decades later — after spending many days, weeks, months  and years working with volunteers at the local and state level to raise awareness and the critical funds for Type 1 diabetes research — I can admit it: My co-worker was right in sharing his quotes with us. With a shout out to my former colleague, Karl Bren, here’s the quote that fits perfectly with the diabetes online community (DOC) perspective:

“Never believe that a few caring people can’t change the world. For indeed that’s all who ever have. ”
Margaret Mead, The World Ahead: An Anthropologist Anticipates the Future    

So, if the Genie stopped by today and granted me 3 practical — not magical — wishes to change the diabetes world — here’s what I’d want to make happen:

  1. Remove the FDA’s ability to delay or drag its bureaucratic feet — to block cutting-edge insulin pump technology that is being used successfully in Europe.  Bring it to the USA. Now.
  2. Remove roadblocks so we can expand the research and exploration into stem cells and regeneration technology like the efforts now underway in California by ViaCyte. Let’s “wake up our unemployed pancreas” and bring it back to full employment producing beta cells and the insulin we need ON Command. (A related side wish — Bring back the missing limbs, bring sight back to the blind, and restore full health to the persons who’ve lived with Type 1 diabetes for decades and lost a few rounds with the killer. This one’s for you, Aunt Mary Jane!)
  3. Ask everyone to stop blogging, tweeting, snap chatting and every social media form of expression for 1 year — and go visit their next-door neighbor, siblings, family members, strangers and find ways to improve your own piece of the world. What’s your passion? What problems plague your community? If you have diabetes, cancer or any life-threatening disease — see if it makes sense  for you to volunteer for a human clinical trial. Jump in and encourage others to do the same. We need more trials so we can stop curing Mice With Diabetes and focus on Persons With Diabetes.

We are the world, we are the children, We are the ones who make a brighter day, So let’s 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 … We R the Cure!”

It’s Diabetes Blog Week, and this entry is for the “Change the World” topic.  For more on Diabetes Blog Week, including participants and topics, click on the respective links.  It’s not too late to join in the fun – jump in now!


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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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