Ride in the Hamptons……..THIS SUNDAY! Seriously……through the GORGEOUS Hamptons

DRI Ride We read all the time about these incredible rides.  If you are anywhere in the tri-state area this weekend…..enjoy one of the most beautiful rides around….through the incredible east end of Long Island.  And there is a distance for everyone.

The Tour begins in Southampton and travels through mostly flat terrain and rolling hills on the south fork of Long Island. Riders will pass farmlands, beaches, mansions and historic towns such as East Hampton, Amagansett and Montauk before returning to Southampton.

The Tour has routes of 25, 50, 70, 100 miles and two 25-mile guided rides. Registration: Pre-paid registration is $45 and is available online only. To register, please use/click this link. Tour Day registration is $50, payable in cash or check. Credit and debit cards will not be accepted. There is no mail-in registration. rest stops will include plenty of food and refreshments, and hero sandwiches will be served at the end of the ride.

Start Times: 100-mile route 7:30 a.m., 50 and 70-mile routes 8:00 a.m., 25-mile route 9:00 a.m., and the 25-mile guided rides at 9:00 a.m. and 10:30 a.m.

The Tour Closes at 5:00 p.m.

Helmets Are Required For All Riders Regardless of Age. All Riders Are Required to Follow The Rules of The Road Including Riding Single File.

Location: Southampton High School
141 Narrow Lane
Southampton, NY 11968
(Map)
Fees: $45 Registration Fee
Contact: Lily Scarlett
Director of Special Events
Diabetes Research Institute Foundation
410 Jericho Turnpike Suite 201
Jericho, NY 11753
PH:516-822-1700

We hope you will join the DRI at the Tour of the Hamptons as we Ride for the DRI. Use your personal fundraising webpage to collect donations from family, friends and colleagues who will want to support your efforts in helping us find a biological cure for diabetes.

More than just a ride, this is an event!
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Full disclosure: I am a staff person of the Diabetes Research Institute Foundation

 

IRMA: WHERE TO POINT PEOPLE IN NEED OF DIABETES SUPPLIES

Hurricane IrmaBelow is a message I just received from Carol Atkinson of Insulin for Life-USA.  Please share it with people you know in Florida and pay close attention to help happening for those in the Fort Meyers area this weekend.  So if you have supplies, hear of someone in need, and/or have few bucks to share, help IFL—-please read and share:

“This morning IFL USA received a call from a physician (general practice DO) in Ft. Myers.  He was taking his dog for a car ride to enjoy a little AC as he was out of power.  He heard an interview on the radio (Editor’s note: Which was our good friend Joe Balavage, a diabetes dad and founder of a FABULOUS organization: Help a Diabetic Child who was on the Trey Radel radio show).  He came home and called to inquire if we could help.  He is working with his church (Church of Jesus Christ of Latter Day Saints, 1305 Broadway Ave, Ft. Meyers, FL, 33901) to host a help center this weekend for three days to assist in the community.  He will be there and will assist those with diabetes.  We are working to send him supplies.  Hopefully we can ship today with overnight delivery.

If you receive word from some in his area, please be sure to point them in his direction.
If you hear of other health care providers have them call us.
Have a great day.

 

Carol Atkinson
Director

(352) 327-8649″

If you cannot give supplies, feel free to give a donation to this incredible organization; during times like this—–their service is invaluable.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Why Go It Alone……Ask!

Boat manIn addition to asking for help on social media when you come across a ‘hiccup’ in your diabetes journey, make sure you also ask for good and reputable websites to help you address a problem, or for that matter; any problem.

Little, if anything, has yet to be seen in this crazy world of diabetes and (no matter how small, or how large, you think your challenge is) chances are someone can say ‘been there, done that.”

Gaining an insight of personal experience is always a help, but also make sure you always ask if there is a website from a reputable source to help ‘walk you through’ any situation. Many, and I mean, MANY pages of useful information are within our social media highway and I have found that you can find pretty reliable information……..merely by searching.

Quite honestly, I lost count on how many times we went to the library the years following Kaitlyn’s diagnosis in 1992.  Countless days and hours spent looking up this or looking up that…….and now all of it is at our fingertips.  But always remember that because it’s easily accessible does not mean it’s necessarily, all, correct.  Check your facts and do not take someone’s opinion/experience as gospel.

Remember that this disease is as different from one day to the next as it is from one person to the next.  That said, the information is limitless to those who look for it.  So do not only speak to others on the various outreach; check what you hear.  But also know that information, moral support, and experience awaits you by only asking and verifying.

All of this can equal a more informative diabetes world for you, for your child.  Education is always the equalizer to this disease.  And it’s a disease that can be managed……and managed well…….look it up.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Where Did Everyone Go?

wide eyed animalI still have a hard time understanding where people go after being active in diabetes causes for so long….one day…….poof, done.
“I am tired.”
“I cannot ask my friends for money anymore.”
“My kids are older now, let younger people take over.”
“I got so tired from broken promises…..it is all just a waste of time.”

BULL DINKIE.

So many times we tout that our children MUST keep at it, be vigilant, keep going no matter what.  What if when they turned 23 and just said, ‘no more’.  ‘I’m done.’  They can’t because they will die if they do that and do not think that they have not felt the burden of ‘doing diabetes’ 24/7.

For whatever reason you stopped…..look in the mirror and realize that it was a bad decision. No one says you have to take on the world like you used to, but no one says you should wither away and go away and do absolutely nothing either.   There’s room between running the largest event in the state and doing nothing anymore.  If we do not do for ourselves, ask yourself, “who will?”

We do not accept excuses from our kids, and honestly, they should not have to accept excuses from us……ever.  Why is any excuse bigger than the welfare of our kids and those like them?  Doing nothing will get absolutely nothing done.  So ask yourself where you fall on the spectrum………and get up off your comfy chair and do something.

Now.
🙂
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Not the Pain, but the Void………Left Behind.

blackToday, I saw the date in the lower corner of my computer.  August 22, 2017.  I started to reach for the phone because I knew, inherently, that the date was significant. I reacted because I had not yet called my dad to wish him a happy birthday.  “Oh, I gotta call……..”

But you see, I didn’t have to call, because dad is gone.  Dad passed away on March 16th 2009.  But at some point every August 22nd since, I have started to reach for a phone during the day.  The urge to react on what I must do, is just a tad faster than the realization of what is true and what is real.

It will,  undoubtedly, also happen during every baseball season as well because if it was one thing dad and I liked to discuss, it was baseball.  It is not a real ‘pick up the phone and start to dial’ and realize, “oh, he is no longer here”.  It’s just that quick second and the beginning of that motion and that thought.  The aftermath is that you start to realize, “wow, was I really going to call dad?”

It’s a time to reflect on who we miss.  Their smile.  What they may have said that made us laugh; made us cry. made us angry, made you inquire as to what they meant, and made us think.  And truly make us miss them beyond comprehension.   So many people come and go in our lives and they are taken in an instant, or are sick, or are here one minute and gone the next but at sometime or another the void they leave behind is both realized and immeasurable.

We do not really ever accept it, do we?  I was taught once……we learn to cope.

That void can be a reminder but more than anything else…….it’s just that……..a void.  We can try to fill it or push it away but at some point the void reminds us that one who filled it, is no longer here to do so.  Makes you want to hug someone today, doesn’t it?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

What am I Doing Here?……..for Kycie, for Reegan……the Fight Goes On!

Kyce ReeganThis is the question I asked myself as I looked at the many attendees at the American Association of Diabetes Educators (AADE) Annual Meeting who stopped in to the presentation of the incredibly knowledgeable Susan Weiner and myself at our missed diagnosis of T1D.  People believe that speaking in front of a large crowd is easy for me, in reality it is not, for reason that those who are close to me understand.  It is even more daunting when the audience is full of professionals.  REALLY SHARP PROFESSIONALS.

The week before I was to speak I reached out to two parents who lost their child to this disease being misdiagnosed and to fill them in on what was happening. It is always a stark reminder to me that this work should not, and will not, stop for me until the paradigm is changed to a direction where each and every person showing stomach virus like symptoms (and more) are checked for elevated blood sugars.

What makes it easier for me to present is when I reflect on each and every person I have met in this battle who has a child who and is no longer here because a simple blood check was not done.  I also reflect on the many people who have joined this fight, and have been in this fight, long before we have arrived where we are today…….but make no mistake; the surface is barely scratched.

Presenting at AADE allowed a very unique opportunity.  Hopefully, and eventually, every state will hear the message and carry the banner.  The list keeps getting longer of those who help and when it comes to AADE, Susan has been my mentor and guide through the maze of people more educated than I could ever become and true community leaders.  My thanks to her are endless.

I also know I have a story to tell……..and as long as I have a breath in me, the story will continue to be told………it’s owed that much energy, and more, to Kycie, Reegan, and the so many more who can no longer fight for themselves.  Are you still in the fight? Because we surely need everyone willing to spread the word.  Let’s not wait for the next Kycie or Reegan to happen to say, ‘this is horrible’.  Let’s get rid of ‘horrible’.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Someone Dies……..it’s None of Our Business……..None. Period.

SunriseI find it absolutely astounding that when someone with T1D passes away…..from diabetes or something else, the questions begin about the cause as if someone has the right to know.  Here is the hard truth…..you don’t.  For whatever reason you think it is okay to soften;  the ask, the question, or the statement…..it’s not, it’s wrong.

Because when someone loses anyone in their family for whatever the reason, it’s their situation to deal with and theirs alone.  NOW HEAR ME PLEASE: If you think for one split second that you might learn anything by knowing the reason of another’s death then it is my strong suggestion that you educate yourself more for whatever the reason is that you think knowing about someone else’s death will help you.

There is just no soft way to present this but being straightforward honest about it.  It was wrong years ago, it’s wrong now, and it will stay wrong tomorrow.  Imagine dealing with something along these lines in your own home (God forbid) and someone asks, “I’m so sorry for your loss but is it okay to ask how they died, we are all so sorry.”  The answer comes across, “Well actually they committed suicide.”   Got your answer?  How proud of yourself are you right now?

Get it?

Anyone certainly has the means in today’s social-media world to relay to anyone, and for that matter, everyone; if they so choose.  But it’s their choice and we have no right to
ask.  Be there, offer a shoulder, a meal, offer to help in any way but when it comes to the specifics surrounding the death of anyone….online is the last place anyone should be asking anything about specifics.  Period.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

What Do You Say to a Newly Diagnosed Family?

Two male hands; one reaching down to assist another hand reaching up with sunburst in the background

To this day it still happens.  The phone rings and we’re informed by a friend/neighbor/colleague/friend-of-a-friend that someone new is diagnosed with T1D and can we find the time to speak to them and/or their family?

Well the answer is…………………..always.

But it’s a fine balance to let them know that they are not about to lay in a bed roses and at the same time share that they should be limited by nothing.
Not everyone stays up all night, but people do.
Not everyone cries every day, but people do.
Not everyone feels as if the wind is sucked out of them forever, but people do.
Not everyone dies from T1D, but people do.

Where is that balance?

I always try to answer the questions they have directly and honestly.  I try to show them, by examples we have experienced or people we know, that they are able to grasp the seriousness of this disease, and also the limitless possibilities that are before them.

I try to educate them about social media and help them realize that everyone handles this disease differently, and that their medical professional is their number one partner with this disease, and that education is always the equalizer.

I try to keep it simple in our first phone call.  Upon diagnosis, as we all know, they’re not hit by a ripple, they’re hit with a tidal wave and it takes time.  They do not need to be fully educated about everything on our first call.  I try to explain that what they need to focus on is their child.  To stay in tune with their medical professional and although their inclination is to run to the computer, they should do so carefully.

This disease has as many similarities as differences from one family to the next.  There is no one solution for everything.  I explain this as best I can.  But I think the biggest help we can ever be is to just let them know that they are not alone.  That they can reach out any time.  That we have been where they now stand and we have made it through. I think THAT is the biggest help we can ever provide.

Being newly diagnosed…….well……it sucks.  But it’s nice to know that reinventing the wheel is not needed and that a friend is always near by.  We didn’t have that in the very beginning and once we had it, those people became some of the closest people to us, and 25 years out; some of those people are now my closest friends.

Those who know need no explanation, those who don’t would never understand.  I’m thankful for the peeps who mean so much to us and have been there, for all these years.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Why Live Life in Fear When You Can Live it to the Fullest

CWD Smile Face quitters winnersI heard this statement from a person at the Children with Diabetes Friends for Life Conference in Orlando Florida this week.
“I refuse to let diabetes dictate what I do”.
I like that saying and I like it a lot.  It sort of summed up what thousands of people heard this week at this, the 18th Friends for Life Conference, sponsored by the Children with Diabetes.

When we first became active in diabetes causes after Kaitlyn’s diagnosis, I became the Executive Director of the JDF (now JDRF) Long Island Chapter.  At that time we were one of the handful of chapters chosen nationally to serve as an experiment for a new idea called a walkathon (that for years, was really only run by the March of Dimes) to help increase visibility AND revenue.  The JDF was doing walks before, but they were about to catapult to a whole new level of success.

When I became the Executive Director, the chapter was reeling from the death of a young man named Angelo Centano.   Apparently Angelo had many complications but he also had this incredible spirit, an incredible sense of humor, an incredible disposition, and an uncanny way to get things done despite his many physical limitations.  One day I found a note in my desk and it had a quote on it from Angelo.  It was a simple note, but a powerful note nonetheless:
Quitters Never Win, Winners Never Quit.

I’ll never forgot it.

There are many people who lost their battle against diabetes, many.   You have read about them and so have I, knew quite a few also.  Every single person, no matter their age, that I know who we lost to diabetes was ALSO living life to their fullest when they were taken.  They were not comfortable to just live life in a bubble or on eggshells, THEY LIVED!   I have also felt that the people who choose to believe that they can do ANYTHING with this disease do so and pay homage at the same time, in a way, to those who are no longer with us.

No matter what life throws at us (and make no mistake, we all have something), we cannot avoid how it hits us but WE CERTAINLY can get out there and make sure that we are not stopped…..and we shouldn’t be stopped, ever.  The only thing surpassing all of the incredible knowledge given this week at CWD, all of the wonderfully talented people who did the teaching this week, and all of the great times; is THAT sense of empowerment that even with this disease…….limitation is truly ONLY limited by your imagination.  It’s given to everyone…………………….by everyone.

Today many people said goodbye when they left Coronado Springs to the many, many new friends they all met, and the old friends they have known at this most incredible conference.  They inspire each other to do better.  The push each other to the limit to succeed.  They have instilled in each other the absolute belief that quitters never win and winners never quit………what are you doing to get back in the game?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

This Year’s Lisa Award Recipients, A Ball Player, an ‘Un’-Advocate, a Dancer, and One ‘Beyond’ Belief.

I cannot believe that eight years have gone by already since this word lost such a wonderful and inspirational woman.  Each year around June (her birthday), in honor of my friend Lisa Carlinsky, I bestow my Lisa Awards — kudos to people who understand the power of one person. It is given to people who, in their own way, change the world just like Lisa did.  This is a VERY BIG deal to me because these award are not given lightly.  They are given in honor of a woman who was not satisfied to just feel sorry for herself, she changed many lives and I miss her to this day.

Lisa and MarkMy friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would or even could. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.

Here is a quick summary of Lisa’s story, before we get to the awards.

She was diagnosed with cancer.  Lisa and Mark (her husband, who is as close to me as any brother) shared their writings of her journey with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.

And then something happened.

People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad.   Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.

And then something else happened.

A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions.  So many others facing trials hit them ‘head on’, inspired by this young couple.

Eventually what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do.  Her spirit, though, was never defeated.  The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.

This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever it is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.

So my 2017 Lisa Awards go to:
Sarah-Mary Sarah Lucas, one of the founders of Beyond Type 1.  Sarah is the driving force behind one of the world’s newest, largest, and absolute fastest growing organizations on the planet.  While most are having their third or fourth meetings discussing strategies on how to organize something, Sarah is already finished with one event and on to a second.  Her ‘no-nonsense’ approach is refreshing and encouraging.  Sarah is not only a genius at implementation, she works any project down to the finest detail……..and she does it faster than anyone else.  Her Team Bike Beyond, Missing the Diagnosis of T1D, and incredible Beyond Type 1 community are just a few of her examples of undertakings of monstrous proportions. And yet, when you speak to Sarah and her warm eyes reflect the love and dedication she has to curing her daughter, Mary, and she shares how important each project is to be successful, you are won over instantly that this incredible mom has a heart that is as expressive as her eyes, and you want to go along for the ride……..and you do.  Typical Sarah style is to give the credit elsewhere, but that Power of One is truly evident in all that she does………and the world is surely better for it.

ElizabethStein Elizabeth Forrest.  Elizabeth is a power of one like few I have ever had the honor to know.  In the year 2000 at a very, very, young age Elizabeth Founded Dancing for Diabetes.  The annual event raises money for many different diabetes initiatives from diabetes education to funding a cure for diabetes. Next year she needs to move her Orlando Dancing for Diabetes event to a venue that will hold at least a thousand people because of the growth of this incredible night of dance.   Clearly Elizabeth is as comfortable in front of a camera as a large group of people sharing what she can to improve this diabetes world for others.  And yet, when you see this powerhouse of a woman on one knee talking to a young dancer is when you see Elizabeth at her best.  It is the encouragement aura around her sharing that although that child has T1D, they are limited by nothing.  She not only talks the talk, she walks the walk and as you listen to her you fully understand that this POWER of ONE will never accept the phrase ‘won’t work’ ever, anywhere.

Christel Marchand Aprigliano Christel Marchand Aprigliano.  Have you ever been active in something that perhaps makes you attend many meetings throughout the year in different places and each time you attend you see someone and you say to yourself, “I need to know more about THAT person because I see them everywhere”?  That is Christel.  Not a diabetes conference goes by that she is not somewhere moving the ‘diabetes agenda’ forward for all those, like her, living with it. Diagnosed at the age of twelve, Christel’s very life makes it clear that diabetes is merely something she has and should not be what defines her.  She founded the ‘UnConference‘ which (from the website) allows participants to create and moderate the agenda, allowing for a wide variety of topics and viewpoints that might never be covered in a traditional conference.  Using various sharing methods that focus on drawing out responses from all attendees, those in the room learn from each other in a peer-to-peer environment.  She undertakes many initiatives and causes that would tire most out in just a week and to be honest, I look forward to those conferences where I see her because there is ALWAYS something happening in Christel’s life that is both exciting and new…..Power of One Indeed.

Dustin Jilly with kids May 28 Dustin and Jilly McGowan.  Dustin pitches for the Miami Marlins and does so with T1D.  Jilly and Dustin also have a daughter with T1D and both were extremely instrumental in creating and implementing one of the newest and coolest support groups in the country. During many games throughout the season, kids will meet personally with Dustin and be inspired by his ability to pitch in the big leagues and hear his stories about baseball and managing diabetes.  After they are on the field for batting practice and meeting players, the kids attend a diabetes support group meeting with their parents right in the stadium where they hear from professionals about living their lives to the fullest.  After the support group meeting while wearing their new Dustins T1D All-Stars tee shirts they stay for the game and cheer on their hometown Miami Marlins.  Dustin and Jilly have an enormous amount on their plates as it is, to stop and do this to directly impact so many kids is not only admirable…….it’s inspiring.

I think Lisa would be very proud and happy with this year’s recipients.  The Power of One, that was Lisa; and that is certainly this year’s recipients.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.