2017 JDRF Recap

The 2017 JDRF "year" for the Shapiro's and Jessica's J-Walkers, was a very busy and enjoyable year - for the most part.  We took park in a lot of different events, fundraisers and raised a lot of money for JDRF to help people with T1D (Type One Diabetes).

The year started off with an unfortunate, impromptu fundraiser, when Jess's grandmother - Paul's mom - Helen passed away in early January at the age of 94.  A supporter of JDRF herself, the patriarch of the Shapiro family left a strong and positive impact on all she touched and raised her children in a way that has helped them become the successful adults that they have been. Mom, Grammy, GG, Aunt Helen - was a remarkable person and is dearly missed.

In February, Paul was one of the organizers behind the first ever JDRF Los Angeles art show.  The show was a lot of fun, with a large turnout, over 150 pieces of art and a nice profit for the organization.  It was a true learning experience and although a tremendous amount of work, will be repeated in 2019.

During the spring and summer, Paul prepared for his 2nd JDRF bike ride. In September, he was proud to complete the entire 100 mile course in Saratoga Springs.  And Jess helped make the weekend special by volunteering at the rest stop at mile 40/60 and Janice joined in the festivities for the weekend.  Saratoga Springs is a very cool town and would make for a nice visit another time.  Paul is looking forward to starting training for the 2018 JDRF ride season.

In October, Jessica's J-Walkers participated in their 15th JDRF Walk, and raised over $30,000 for the year.  That brings the total to over $550,000 in total walk fundraising as the LA Walk seeks to raise over $1.6m.  Our team once again included some of our former coworkers at Verizon Digital Media Services walking as Digital Diabeaters.  We also were able to increase our impact by taking advantage of a challenge match offered by our friends at Kaden's Krusaders to double our donations because of a very generous donor.

Paul continues to serve on the Board and was honored to be named the LA Volunteer of the Year at the June Board of Directors meeting.  He is also an active member of the corporate committee and serves on the executive and nominating committees.

Besides all of the work that we did, JDRF continues to justify these efforts by seeing the release of  the Artificial Pancreas by Medtronic.  There are many other trials and research projects under way and we look forward to seeing the next developments in the ongoing struggle to cure T1D and help the lives of Jessica and others with T1D.

Fundraising Tops $500,000!

We are so thrilled to announce that our cumulative fundraising for Jessica's J-Walkers has now passed $500,000.  We could not have reached this milestone without the amazing support of our walkers and donors over the years.

We are committed to raising money for JDRF until there is a cure or at least no health concerns due to Type 1 diabetes.  Our daughter Jess is doing well as a Resident Hall Director at Ithaca College, but she still relies on a computer device to deliver her insulin and insulin is not a cure.

We participated in the Los Angeles Walk to Cure Diabetes at the Rose Bowl in October and we were thrilled to walk with Paul's company team, Digital Diabeaters from Verizon Digital Media Services.  Even though the Walk has ended, we are still raising money until year-end.  The Walk is just one day, but diabetes is EVERY day.

Thank you for your interest and support.

Here's some photos:

https://www.dropbox.com/sh/xqn7k25fcxz7k4z/AABg5r1TnJfXr08NmdnaWcPxa?dl=0

https://www.flickr.com/photos/jdrfla/sets/72157672403535783/

Do Something Meaningful Employee Spotlight: Paul Shapiro

I am honored to be featured in an AOL employee newsletter.  Its on a private server so I can't link it, but here's the text:


Post created Monday, October 3, 2016 - 2:40pm by Jamie Mittelman

 

Paul is pictured above in the blue shirt

As a company that champions talent as its differentiator, it's important to celebrate the many ways our employees go above and beyond in all aspects of their lives. We often recognize excellence in the workplace, but less frequently celebrate excellence in the community.

Meet Paul Shapiro, Director of Finance, Verizon Digital Media Services, this week’s employee volunteer spotlight.

Paul and his family walk team have helped raise almost $500,000 over the past 13+ years for the JDRF. JDRF is the leading global organization changing breakthroughs to cure the disease and create a world without Type 1 diabetes. Join the cause with Paul and his new DMS team the Digital Diabeaters. How? Go to http://www2.jdrf.org/goto/VDMS to​ register or make a donation. Once registered, you’ll receive more information. Join the conversation via the Slack channel #digital-diabeaters.

Paul will be hosting a quick info session (with snacks!) on Wednesday, 10/5 to learn more about JDRF, the AOL matching funds process, and the philanthropic walk taking place on Sunday, 10/30. Join your colleagues in the fight to cure Type 1 diabetes!

A note from Paul –

When I was younger, I didn’t really understand the importance and “benefit” of working with a non-profit. I was a member of KCRW and KCET, wrote checks to Heal the Bay and Tree​ people and thought of myself as a relatively philanthropic person. It wasn’t until a disease diagnosis for my daughter hit me in the face that I decided I needed to do more.

I originally got involved with JDRF (Juvenile Diabetes Research Foundation) in 2002 when my daughter Jessica was diagnosed with Type 1 Diabetes (T1D) at the age of 10. She’s now 24 and doing great in her new career in College Student Personnel. In her honor, we started a JDRF family Walk team called Jessica’s J-Walkers that has raised almost $500,000 for diabetes research in the last 13+ years. If you don’t know me, I’ve been in a finance role at the company for some time. Actually, I was the first CFO (part-time) of Edgecast back in 2007 when I was consulting for startups. Over the years many co-workers have generously helped out with prior JDRF Walks.

T1D is a manageable disease but it’s an unforgiving one, and incurable. It differs from Type 2 in many ways, mainly that it’s an auto-immune disease and can only be treated by insulin. Careful monitoring of highs and lows, finger pricks, insulin dosing and nutrition care are constants. It may be a cliché, but you can’t take a day off from Type 1 diabetes. The management and outlook have improved greatly during the 13 years we’ve been involved, and there are many reasons to be optimistic about the future.

JDRF has been at the forefront of diabetes research for a long time. Their ultimate goal is to cure T1D. One pathway to get there is to pursue research to improve treatment of T1D in the short term and mature over time into curative therapies. They are also trying to prevent new diagnoses of T1D and treat people with T1D through cutting edge technology and smart insulin.

I’ve made a commitment to my daughter that I’ll keep fighting against this disease until she no longer has to worry about long-term complications or short-term tragedies. But this cause is not just about me and my family. I’d guess that many people reading this also know someone with diabetes and I ask for your empathy and generosity when thinking about getting involved with the upcoming JDRF Walk.

I’d like to invite all of my co-workers to join our team, Digital Diabeaters at the Rose Bowl on Sunday October 30, 2016. This is a fun family event that usually draws around 10,000 people. It’s free, but we ask everyone to raise at least $100 to get a T-Shirt. If you can’t make it, please support your friends and colleagues.

Stay tuned for more information and fun ideas that we have in the works to make this year’s walk a success. I’m so excited to get the company’s involvement this year, and hope that you’ll be able to share the experience.

Thank you for your inspiration, Paul and best of luck with your walk!

How JDRF Paved the Way for Medtronic’s ‘Artificial Pancreas

FDA Approves Medtronics Artificial Pancreas

Yesterday, the diabetes world had a similar experience as Medtronic won approval for the very first “Artificial Pancreas” in the United States. Like that earth orbit, this launch is just a beginning. And like that world of watchers in 1962, the diabetes community is filled with hope, wonder, and joy.

Before we go into details: a checkpoint from JDRF CEO Derek Rapp, who spoke to JDRF leaders on a call Wednesday afternoon: “Our work is not done. Today is a great day, but we’ve got more work to do.”

JDRF had reason to celebrate: it was at a board table just a decade ago that then international board member – and now Bigfoot Founder – Jeffrey Brewer gave his own call to action. Acknowledging the long road ahead until a cure, Brewer challenged JDRF to expedite the road to better tools, specifically to what came to be called the “artificial pancreas.” Rapp commended Brewer today and said he’d be calling to personally thank him.

So where are we?  Medtronic has won USA FDA approval to market their Medtronic MiniMed 670G hybrid closed-loop system, a “hybrid pump”. In doing this, the FDA became the first regulator in the world to approve a commercial version of this technology. It is approved for people 14 and up, and Medtronic has plans for trials to win approval for children under that age in the near future as well. Of course, as has been the case as pumps and CGMS come to the market, patients can work with their physicians to get approval “off label” for those younger ages.

JDRF Chief Mission Officer Aaron Kowalski, who has headed up this push, said today that Medtronic is hoping to have the system on the market by the spring of 2017, and that they do not expect the price point to be much different than their current system, the 630G.

Why is this a big deal? Because, put simply, this has paved the way for similar products – by many companies – to win approval as well.

Rapp said that without JDRF, this would never have happened. “Make no mistake: This day would not have happened were it not for JDRF. The name on the product might not say JDRF, but our work went into making this a reality.”

That work started years ago when JDRF funded the first trial at Yale to prove an algorithm could work in such a system. They went on to fund more trials and also to push the FDA toward approval. The JDRF push to prioritize AP project moved the products toward the top of a very long list at the FDA a number of years ago.

“This is an epic day,” Kowalski said. “To see it happen after over a decade of work is amazing”

The hybrid system requires the user to still do mealtime boluses. But, it also turns off when it detects lowering blood sugars, and ramps up insulin doses when it detects a trend toward high. The system will use the new Medtronic pump body, a 4th generation sensor (Not the current Medtronic sensor) and a control algorithm to automate basal insulin delivery to maximize the time glucose levels are in a healthy range throughout the day and night. Previous systems stop insulin in response to existing or predicted low sensor glucose values; hybrid closed-loop systems combine user-delivered pre-meal boluses with automatic insulin delivery.

JDRF is working harder now, Kowalski said, with a goal of access for all for all such products, and to continue pushing other products toward market as well.

“This is not the end of the game,” Kowalski, who estimates that JDRF’s work and funding accelerated this process by five to seven years, said. “We want other systems, competition and ultimately, a cure. Ultimately, we want to completely eliminate the need for this system with a cure.”

The Medtronic system won’t be the end all, nor will it be the only one available. But the FDA approval, imagined at a table by Jeffrey Brewer only a decade ago, is reality. And just like that orbit of earth, it could very well be a most remarkable beginning.

Jessica's J-Walkers 2016 JDRF Walk Letter

Here is Jess' 2016 Walk letter; I hope you'll take a moment to read and consider donating and/or joining us at the Walk:

I started my first ever full-time job in late July after making the journey from California to Ohio to Ithaca, New York.  I have really started settling into my new position and new home.  Diabetes still hovers over me like a dark cloud on a daily basis, even though I will be “celebrating” my 14-year diagnosis anniversary in December.  I worry about forgetting to give myself the correct amount of insulin in the midst of trying to enjoy meals with coworkers or rushing off to the next important meeting.  I still have not found an endocrinologist nearby and it seems like I will have very limited options in a fairly rural area.  I struggle to accurately count carbohydrates as I continue to eat in the dining hall at least once a day (this is my 7th year of dining hall food).

In other words, “juvenile” diabetes does not stop now that I am no longer a student, live on my own, and rely on my parents less and less.  This disease is something I have to think about dozens of times per day and it probably should be on my mind even more than it is.  I know that I could and should take better care of my diabetes, and improved technology will definitely help me do that.  I am really looking forward to the upcoming combined insulin pump/continuous glucose monitor devices that are set to hit the market soon.  This would allow me to go on “autopilot” with my diabetes (to some extent) for periods of time throughout the day and just give me more of the freedom I am looking for in my young adult life.  This would also ease my parent’s minds about the threat of complications and short-term issues.

Since 2003, we have joined with our family and friends in JDRF’s annual Walk, fundraising, JDRF Board membership, and leadership. Our friends and family have donated their time and money to support us, JDRF, and the quest for a cure and a “normal” life.  Over that time, we have raised close to $500,000 for diabetes research, and we'll pass that milestone this year.

Any success we've had as a Walk team and the funds that have been raised are a tribute to those who have been touched by my experience, or their own experience.  However, even with that success, there is still ongoing research to be done and your donations and support will give the scientists and doctors the funds needed to continue their research.

The JDRF endgame has many goals - finding a cure can take different forms.  Smart insulin, artificial pancreas, stem cell therapy, and beta cell transplantation are only a few of the areas where funds are focused.

Thank you again for your support and taking the time to read this short update.  If you want to hear more, just let us know.  Below is a link to join us at the JDRF Walk at the Rose Bowl on October 30, 2016.  We’d love to have you walk with us, but if not, please show your support with a donation – any amount is appreciated.

To join us at the Walk or to make a donation in any amount, just click the link below.  If you’d prefer to send a check by mail send an email to paulgshap@gmail.com and we’ll get you the information. 

Thank you!

Jess Shapiro

Captain, Jessica’s J-Walkers

Paul & Janice Shapiro

Co-Captains

JDRF Walk Video

I wanted to post this video, because its a great depiction of the JDRF Walk, and features the LA Walk.  If you watch closely, I'm shown at .04 seconds into the video...but don't blink!

JDRF Walk Video - 3:00

Shapiro Presentation at Verizon Digital Media Services Monster Help Day

Paul was honored to be recognized at a company meeting for volunteering with JDRF. His buddy Jessica Lee shot this short video of the chat. Thanks Verizon Digital Media Services for the platform
Here's a link to the video: 
https://www.dropbox.com/s/iro4xgak14gst…/PAUL%20SHAPIRO.mp4…


We're not starting our outreach yet, but we'd be happy to have you join or support our cause anytime. Here's the link to our Walk page 
http://www2.jdrf.org/site/TR…