Spotlight: Type 1 Diabetes Community on Facebook

One of the goals of my (and many other diabetes bloggers) advocacy is to bring the community, comfort and guidance of the Diabetes Online Community into the real world - because not everyone is online but everyone should have the ability to find others who understand their lives with diabetes. 

During the recording of episode #23 of my podcast I asked Jack's Mom and Dad about the guidance that was provided to them at the hospital during their son's type 1 diagnosis. I was thrilled to hear that insulin pumps and continuous glucose monitors were on the menu but I couldn't quite believe my ears when Beth told me that their doctors recommended a Facebook support group. My heart leapt and I instantly thought of Cherise Shockley the founder of DSMA... she is always talking about bringing the goodness of the online community into the real world. Looks like it's happening and wait until you hear how that advice has benefited the Tran family.

Below is some information on the Facebook group that Jack's parents are members of and an inline player that you can listen to their podcast episode with... you can also listen at iTunes, Stitcher or on your favorite podcast app. 

Type One Family Network (TOFN) - Facebook Page

A little history from the TOFN founder, Alison Zettle:
"TOFN- is for parents(grandparents) of school-aged children or younger with type one diabetes living in Texas. The parents wanted to keep the topics focused on kids issues and not adult issues. We have three networks TOFN-North Texas, TOFN-Central Texas and TOFN-South Texas which includes Houston.
 
How it started: Andrew was dx in March 2010. I was so overwhelmed and I felt so alone. I read and read and read and I kept coming across the statement made by adults with type one "I felt so alone and different as a child". That broke my heart and I knew that in today's day and age our kids did not have to live/feel like that. We have to be aware the mental strain of having type one as well as the physical one.

I knew there had to be other parents living near me that had a child with type one. I wanted to meet them and learn from them and have Andrew meet other kids living successfully with type one. But no one could give me the names of anyone living with type one near me due to HIPPA laws. So I decided to create a local network so that parents and children could meet each other , learn from each other and support each other.

TOFN works closely with JDRF and the local children's hospitals. It took a lot of work to get it going but Andrew and I wouldn't be were we are today without the support of all our fellow D mom's and dads. The reason TOFN is so successful is because the TOFN members themselves. Someone is always there day/night to give you a much needed virtual hug or a "way to go"! I hope TOFN has made a difference in many families lives as it has certainly made a difference in mine."

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JDRF Speaking Event Wrap Up

A huge thank you to the New Haven Connecticut chapter of the JDRF for inviting me to give the keynote at their 2015 annual meeting!

I took the opportunity to thank the nearly 100 advocates in attendance for their time, effort and selflessness. I shared with them how their dedication has helped Arden and how, in turn, I've shared our lives with all of you. Then I told them about some of the amazing things that you have accomplished and shared with me - Full-circle advocacy - I wanted to leave them with the feeling that their local efforts reach much farther than perhaps they realize.

and I took a few pictures for you to see...

Apple Watch...

Trying to decide... tie or no tie?

Hall at Wesleyan University where I spoke...

Before the guests arrived...

Mid hand gesture...

Arriving back at my hotel...

The BEST part of my trip... sleeping through the night!

I spoke a bit about my time at this event in episode #20 of the Juicebox Podcast - links to podcast episodes are below...

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Will Hauver

I would like to thank Lydall Hauver for her courage and for her desire to support the diabetes community. It speaks to the strength of our community that in the wake of what is undoubtably Lyndall's greatest personal tragedy, she would allow herself to be interviewed. I can promise you that if you have type 1 diabetes or love someone that does, this post and the podcast episode of my conversation with Lyndall will ultimately fill your heart with love, hope and a sincere desire to live well with type 1. So grab a tissue, read Lyndall's post and then listen to me chat with her and Will's good friend Paige, about his life and legacy. - My best, Scott

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The tragic and devastating death of our son Will, a beautiful person on the inside, and a good-looking man on the outside, has taught me something very valuable.

One person has the ability to make a positive and significant impact on this world.

More photos of Will at JuiceboxPodcast.com

It has been made clear to our family that Will made a huge impact on many people in his 22 years. The quality of Will’s life, and what he did with those 22 years was incredible. Wherever he went, he made an impact. We have heard over and over again about how Will’s compassion, his way of including everyone, his friendship, ‘saved’ many a friend from transferring from college, from quitting a team, from not joining in a great event. Will had such a handle on the ‘big picture’ - what was important in life. He was often sought out by his friends for advice and help. Using his humor he could really relate his advice without being preachy and condescending. He had such an easy, approachable, welcoming way about him, with the confidence that others admired and respected.

One person has the ability to make a positive and significant impact on this world.

“It is not length of life, but depth of life.”

— Ralph Waldo Emerson

This past summer Will was nominated to complete the ice bucket challenge for ALS awareness and donations. While donating $48.25 to an ALS charity (to an ALS charity Brigance Brigade) he filmed a video, which is very funny, and created a challenge for the JDRF and “LIVEabetes”. After Will passed away, his good friend from high school, Paige, one person, galvanized behind this comic but meaningful video, and created a movement to raise funds for the JDRF. Through a lot of hard work, a lot of learning about different social media options and a lot of creativity, Paige created a great group of supporters, myself, and my family included, to create a worldwide challenge raising awareness and money for type 1 diabetes. Incredibly, to date, we have raised over $80,000 for the JDRF to fund a cure for this dreadful disease.

Paige and Will, two young people, have made such an impact on this world, simply by being good people. They chose to live their lives by these simple principles: be kind to others, be inclusive, help others, know who you are and do not compromise your morals to fit in and make deep and meaningful connections with people you encounter. After Will’s death people from around the world rallied behind the man he was, to support the Egg Crack Challenge Paige worked hard to promote and grow. We now have an amazing community of friends, new and old, who have banded together to raise awareness and funds for a cure for type 1 diabetes.

One person has the ability to make a positive and significant impact on this world.

Our daughter Megan and Tommy are like Will and Paige, two people who have a keen sense of self, who stay true to that self. Similar to Paige they have worked hard to promote the Egg Crack Challenge. Additionally they have created T-shirts, posters and other item to share the joy Will created as an artist to raise money for type 1 diabetes and for scholarships in Will’s name.

Will told his girlfriend weeks before his death, “Each day is a gift, that is why they call it the present.” His ability to use humor, and kindness to live each day to the fullest, to make an impact on each person he encountered, has rubbed off on me, and on our entire family. This attitude is why we get up each day and try to salvage what we can out of each day, no matter how hard and how sad we may feel. Knowing that one person has the ability to make a positive and huge impact on this world makes me move forward to create my own positive, impact, each day. 

- Lyndall Hauver, Will's Mother

You can listen to my conversation with Lyndall and Paige with the player below, on Juicebox Podcast, iTunes, Stitcher or your favorite podcast app. 

links you need:

Will's JDRF Donation Page
Egg Crack on Facebook
Will's Egg Crack Video on YouTube
Rollins College Memorial Service for Will
Egg Crack Homepage
Shop for gear and bracelets (Supports JDRF and scholorships)

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Giveaway: Charlie Kimball Collectable Car

Who's up for a fun giveaway!?

Enter to win this Charlie Kimball replica Indy car and 5 pairs of the hugely sought after but rarely seen blue diabetes circle shoelaces.

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a Rafflecopter giveaway

There are a number of ways to enter the giveaway, and some of the entry options are even eligible to be completed daily (Like sending a tweet to Charlie asking him to be a guest on the Juicebox Podcast). 

Prizes & "Rules"

• 1 person will win the Charlie Kimball replica car and 5 pairs of blue circle shoelaces
• 1 person will win a signed copy of my book Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad and two pairs of laces 
• 3 people will win two pairs of the laces

The Rafflecopter app will choose the winners at random. Winners will have 48 hours to respond to an email asking for a mailing address or risk forfeiting their prize. Prizes have no cash value/equivalent. Contest exists at my discretion. It's just for fun and so one lucky kid can play with a Charlie Indy car and trading card.

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Diabetes Blog Week Day 1: I Can...

I can...

Diabetes Blog Week begins on Monday, May 11 and runs until May 17. The day one writing prompt is, "I can...".

I realized last week while talking to the creator of Diabetes Blog Week, Karen Graffeo for the Juicebox Podcast that I can help people in the diabetes community that want to share their thoughts during blog week... but don't have a blog.

With that in mind - If you are a person who lives with diabetes, or you love someone that does and you don't have a blog... I'm excited to offer Arden's Day as a way for your words to find their way into the community. 

If you are interested in publishing your diabetes blog week writing on Arden's Day contact me by email and we'll make arrangements for your post to be featured during blog week.

I can help the diabetes community to grow...

My conversation with Karen Graffeo is available now on the podcast. You can listen to the Juicebox Podcast here, on iTunes or with your favorite podcast app. Karen's episode started out as a conversation about Diabetes Blog Week but quickly grew into a discussion about what it was like to be a child with type 1 diabetes over thirty years ago. I think you'll love hearing Karen talk about growing up with type 1 diabetes, how she imagined blog week and much more.

Share your life with diabetes today. Your transparency will help others in ways that you can not imagine. You can find out more about blog week and add your name to the participant list here.

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