Promise Ball 2013: Rock Lobster and $2.4 Million for JDRF

Sam, Talia, Jon and I attended the 42nd annual Promise Ball at Cipriani Wall Street on Thursday. Sam is a veteran at the Fund-a-Cure auction, but this year, Talia got to go on stage as well. The theme was how diabetes affects an entire family and she spoke about her role in the TRIGR study and her blood tests for research. Sam talked about the ways that his family supports him - "too many to count." The evening raised $2.4 million for JDRF. Sam and Talia also got to keep the B-52's drumsticks after their set.

41st Annual Promise Ball

Sam and Michael Strahan rocking it on stage in their tuxedos.

1st Place in the Un-Marathon

In light of the tragic losses related to Hurricane Sandy, Jon and I completely support the decision not to hold the 2012 ING Marathon. After months of training and a feeling of obligation to all of those who supported our JDRF fundraising efforts for the race, a sense of personal obligation, and above all a need to fulfill his obligation to Sam and Talia, Jon ran his own 26.2 mile loop in Central Park on November 4th. We cheered for him and thousands of other New Yorkers running for charity or other reasons that needed fulfillment. Sam presented him with a handmade medal at the finish line and Talia made a plaque that said, "Go Dad, Go. You did it! You ran the marathon." Congratulations, Jon.

Speech to JDRF Researchers and Scientists

I was invited to be the keynote speaker at the International JDRF Fall Retreat for researchers and scientists. It was one of the most difficult speeches I have ever given. I was very taken by the emotion I felt when I stood up to give the following speech:

Good morning. Thank you for inviting me here to speak to you today. My name is Rachel Dickinson. My son’s name is Sam. Sam. You are connected to Sam. Sam is connected to you. You are so important to Sam and to me that it seems strange that we have never met and may never meet again given how much I want for you to succeed.

There is a children’s book by Leo Leoni called Frederick about a mouse that doesn’t seem very busy as the other mice prepare for winter. As they gather food, supplies, and so forth Fredrick gathers up the warmth, colors and sounds of the waning summer. Eventually, their stores run dry and the mice turn to Frederick to share his supplies. It is cold and grey and the mice are hungry. Frederick uses his memory to make stories that sustain them until the spring. Maybe you can put Sam’s story away for a time when you need it in the future in case your stores ever run dry about why you do what you do and how much it means to everyone affected by Type 1 diabetes.

I have two young children. Each day, I see new traits in them that are familiar in various ways. The determination in my daughter’s blue-grey eyes the exact same color as my husband’s. The way my son walks down the street with Harry Potter in front of his nose tripping over roots because he is happily lost inside of a book – it's me in second grade. Long eyelashes that scrape the insides of sunglasses, a love of nature, a wedged pinky toe, a sense of humor, a talent for puzzles or music – these are some of things that make these particular kids mine. These are the familiar things that make us family.

Diabetes was always familiar to me. My mother has had diabetes since I was a child. Her brother, who suffered terrible complications including being a double amputee at the end of his life – the end being in his early fifties – had diabetes. Various grandparents acquired type 2 later in life. Still, nothing could prepare me for the diagnosis I received on October 23rd 2006, Sam had diabetes. He was 21 months old. I was 7 months pregnant with my daughter, Talia.

Could I have prevented this? Was it related to the coxsackie virus he had had a few weeks earlier? Which toy did I let him put in his mouth that caused the virus that ultimately provoked this reaction in his pancreas? It’s a joy to take credit for a child’s wonderful traits, but my smart, beautiful, happy boy had obviously inherited this from us too. Will Talia get diabetes? Or the children’s cousins? I don’t know, but maybe one day you will. Talia asked us once as she was getting her annual blood draw as part of the Trigr study for siblings “when she will get diabetes” and will we be as worried.

JDRF is an amazing entity and has done so much for us personally and for our community. I have a friend whose daughter has a very rare syndrome – maybe a thousand kids in the world have this chromosomal abnormality – and she started a foundation and they just received their first 50K grant. They started a walk in honor of their daughter Sydney – one family, maybe $100k to date. Hope for a thousand families, but really it puts into perspective what it means to have this kind of infrastructure at work toward a cure. JDRF has spent $1.6 billion to date. How much will it cost? Will I still be doing the Walk to Cure Diabetes in 20 years? Going to the 60th Promise Ball? Lobbying the FDA? I expect so, but I hope not. What does a cure look like? For me, it looks like less worry. Less testing in the middle of the night, less disruptions in the classroom. Less time for Sam feeling badly from being high or low (although you’d never know it because he never complains). Less chance of devastating complications. Prevent? I can’t prevent it for Sam but maybe for Talia or for their children. Treat? Absolutely anything and everything that moves this ball forward to make life easier for Sam gets my support. The new test strips that suck up the tiniest bit of blood? Bravo. Wireless insulin pump (which by the way my mother was also on until she recently turned 65 and medicare coding has determined isn’t a real insulin pump because it’s not a durable medical good based on the disposable pods) great. Connect the pump to the CGM even better, and artificial pancreas even better than that. Reversal? You know better than me if we can re-engineer the immune system but if you think it’s possible I’ll walk for you. Every donation we get – all of the kids friends – preschoolers and kindergartners walking 3 miles on September 30th – they are doing it so you can help Sam live a long life – maybe even one day free of diabetes. This connection between you and Sam is strong.

Our family has a blog about our experience living with diabetes and I wanted to close by reading a post that my husband wrote that seems like a good fit for this team. It’s about insulin and developments in research. And it’s about us. It’s called “Important” - here it is:

A good friend and colleague recently lent me a book titled, “Breakthrough—Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle.” I’m only about 20 pages in to it, managing only a few pages a day as I ride the subway (and oddly holding the book up to show off its cover—subconsciously hoping that others will see and somehow understand why I’m reading this book). As its title connotes, this book chronicles the discovery of insulin as a treatment for type 1 diabetes. In 1919, diabetes was a terminal illness, with most patients surviving no longer than a year after diagnosis. A fascinating story awaits me, one that is deeply personal, as my son Sam is alive today only because of the incredible medical advances made less than 100 years ago. When I arrived home tonight I found a familiar package waiting—one we receive every three months. As I opened this package I was immediately struck by a recent labeling change to its contents. A white, padded, insulated envelope now said, in white letters inside an orange circle,

IMPORTANT
INSULIN
ENCLOSED

I was immediately taken aback—how to read this? Is it missing critical punctuation, so that I might read it, “IMPORTANT—INSULIN ENCLOSED,” or, as written, “IMPORTANT INSULIN ENCLOSED.” Is it important that there is insulin enclosed, or is the insulin enclosed important? In 91 years we’ve advanced to a world where this life-sustaining hormone arrives at our door every three months. In a contemplative mood, I examined the package a bit more. “FRAGILE, HANDLE WITH CARE” is a common warning, but means so much more in this context. “REFRIGERATE IMMEDIATELY” wouldn’t have been possible in 1919, nor would “UPS NEXT DAY AIR.” This package was addressed to “SAMUEL DICKINSON, C/O FATHER JONATHAN DICKINSON.” I know this means the package is for Sam, to be cared for by me, but I could only read it one way—“Samuel Dickinson is in the care of his father, Jonathan Dickinson.” It’s incredible that in less than a century we’ve transitioned from diabetes being a terminal illness to where Sam’s life is possible due to something that arrives in a cooler bag by next day air. It is essential. It is, to many, a miracle. It is, quite simply, important.

Promise Ball at Cipriani Wall Street, New JDRF Video Featuring Sam Released

On November 17th, JDRF hosted the 39th annual Promise Ball at Cipriani Wall Street. True to the promise I made last year, I allowed Talia, now age four to attend her first gala. She was so proud to be a part of the night and took great care in putting on her pearls and polished shoes. Sam's best accessory is always his smile whether in a tuxedo or a peanut butter covered T-shirt, but both kids looked adorable and it was a very special night.

After a stellar performance by the cast from Jersey Boys there was a program honoring Bob Obernier, a long-time supporter of JDRF. I was both moved and disheartened listening to testimonials from his family and other affected families that were interviewed for this presentation - people whose children are now in their twenties -- and still working (and waiting) for a cure. It made me wonder if there is a post about the 59th Annual Promise Ball in my future and pray that the answer is no.

During dinner, JDRF unveiled a new eight minute video (link below)by Bird's Nest Productions that Sam and I participated in last year. The room was quiet and when the screen came to life the video opened with "my name is Sam Dickinson. I am from Brooklyn, NY and I have diabetes." The first image in the film is of Sam sitting in his room in a Scooby-Doo T-shirt with a Mr. Potato head poster in the background. He is confident and matter-of-fact. A small child, but wise beyond his years. I had to choke back tears as the video went on showing clips of Sam scaling a rock wall on his fifth birthday and playing in the surf on Nantucket. You can also see Jon holding Sam as he changes his pod and does the dreaded "snap" when the cannula enters his skin. At one point, he explains that his "pancreas cannot create insulin."

The kids chased trays of hors d'oeuvres, danced to the band and ran around the beautifully decorated space. Finally, Sam and six other children with Type 1 Diabetes also participated in the fund-a-cure live auction and raised $496K for the artificial pancreas. You can see him with Ron Darling, the former Major League Baseball player and auction MC below. Ron Darling's foundation actively supports research toward a cure for Type 1 Diabetes. As always, we were impressed by the dedicated staff of JDRF and grateful for the generous support of everyone in the room.

Sam and Ron Darling during Fund-a-Cure

Click here to view the video http://www.youtube.com/embed/ETwiV-7-nag

Children's Congress

Spending three days with 150 families that live with Type 1 Diabetes was a unique and inspiring experience. There are no strangers among parents that are all awake at midnight, three and six AM each night or children that share the experience of pricking their fingers ten times per day and are tethered to their insulin pumps at all times. The kids had a great time together and Sam made a friend named Emily, (age four) that he spent most of the time with. I was struck by the poise of some of the older delegates and I know that Sam is developing that quality already as an advocate and as a human being. It goes without saying that the kids did an incredible job of telling their stories to Congress, and I think the FDA took notice of the event. In addition to the delegate families, Kevin Kline, a parent of a child with diabetes himself, testified at the hearing and numerous athletes, scientists and other familiar faces lent their support. During one of the sessions, Sam got up to the microphone and asked Kendall Simmons, an NFL player who has diabetes, how diabetes affects his game.
My favorite photo though is the one of Talia at the top of this post with all the younger delegates who somehow manages to not only be included, but to be at the center of it all. Crystal Bowersox (pictured with Sam and the other New York delegates) of American Idol wrote an original song called "Promise to Remember Me" that the kids performed on the steps of the Capitol. You can see the moving performance and some highlights from CC11 below:

SCD Goes to Washington

Sam will be going to Washington, DC as a delegate from NYC to JDRF's 2011 Children's Congress. 150 Children from around the country have been chosen to remind Congress and the Administration of the need to support research towards better treatments and a cure for Type 1 Diabetes. The young advocates will meet with legislators and participate in a Senate hearing on Capitol Hill. Please view Sammy's delegate video to learn more.

http://cc.jdrf.org/delegates-2011/ny/samuel.php

Sam Meets With Senator Schumer to Talk About Diabetes

On May 7th, Sam and I attended a JDRF meeting with Senator Schumer to thank him for co-sponsoring the bill to renew the special diabetes project. Sam brought a bag of dinosaur parts and played quietly while we waited for the meeting. Earlier, I had told him that I was going to a meeting about getting more scientists to do research for better pumps and find improvements for people with diabetes. Sam wants to be an inventor so this was understandable to him. I told him he could come with me if he wanted. He asked me what I thought he should say at the meeting. I said, "Why don't you just say I am Sam and I am five years old" to which he replied, "Mom, that has nothing to do with diabetes."

We assembled around a small conference table. Sam sat on my lap holding his flying dinosaur creation. Senator Schumer kicked off the meeting by sharing a story about a family friend whose daughter was diagnosed as a teen. We then went around the room and when it was our turn I introduced myself and Sam. Unprovoked, Sam lifted up his shirt and showed the group his pump. "My pump is really important. The snap hurts though, but I am brave about it."

Afterwards, I took the newly minted advocate on a tour of grand central station and for dinner at the Oyster Bar - just the two of us. It was a pretty awesome Friday night.

Thanks from "Sam's Friends"

Thank you for helping us exceed our fundraising goal for the third year in a row. Most of all thank you to those who walked with us (Erinn, Paul, Laura, Madelyn, Liz, Dave, Deirdre, Andy, Ruth, Jacob, Sarah, Lily, Alex, Matt, Donald, Raleigh, big Sam, Sharon, and Grandma). It was a very special day.

Fundraising

Awkward, intimate, inspiring, imposing, shameless, gratifying, necessary.


This exercise raises a real internal struggle for me each year. I am amazed by the generosity that friends and strangers have shown towards this cause on Sam’s behalf. The former colleagues of my mother who annually solicit $5 and $10 donations from their colleagues, friends from childhood, people we know casually from our neighborhood, friends of friends, parents of friends, people who are exceedingly generous year after year, and people who just don’t have to support us, keep on doing it. Every year, I feel as though I can’t possibly do this again and then at the end I am so buoyed by the support and the thought that maybe our efforts made a difference.

I don’t know the origins of walking for a “cure” as a fundraising mechanism. Like everyone, I get a lot of emails like ours and so I am sympathetic to the over-saturation of important causes. We have adopted a few that we support in addition to JDRF. Some we have a personal connection to (breast cancer, ALS, pediatric hospitals) and with others the only connection is that the person we know cared enough about someone else to participate. All the emails begin the same way: “I am walking for my mother, my cousin, my husband, my friend, my child, because this beautiful human being got some crappy disease that they didn’t deserve.” As much as I want to reach our goal (the 2007 and 2008 circle of excellence awards for raising over $10k are hanging in Sam’s room with an obvious spot for 2009), the actual walking is a really important part of this annual effort. The shirts that we make for walk day all say, “I am walking for Sam Dickinson, Age __” and Sam’s says, “I’m Sam.” As he passes, people say “Go Sam!” or “You can do it Sam!” and it makes me think that his future is hopeful. You CAN do it Sam. You can live a great life.

Jon’s father lived with ALS for nine years before his death in 2002. His final years defined courageous. After he was completely paralyzed and lost his ability to speak, he continued to write his syndicated column using only his eyes and a special keyboard. He was nominated for the Pulitzer Prize for those articles. Twice. In one particular article he wrote about all the small joys of life and I distinctly remember the line, “Walk, Oh, do walk when you can.” Even though our fundraising effort is for JDRF, when we “walk” I always think of him and of what a privilege it is to be healthy. Sometimes he would write about day to day events in the life of his own family. I can imagine how he would report on this event and perfectly capture the spirit of walk day – especially the powerful imagery of families spilling across the bridge in support of their children. I wish he had known Sam and Talia and that he could write them a story about this day.

Walking is freedom and power. After a two year period that included open heart surgery and breast cancer, my mother found the strength to do this walk for Sam. Her walk each year has nothing to do with fundraising and everything to do with the power of love. It seems almost possible that this kind of power might crush diabetes. If only.

The truth is that Jon and I believe in science. I want science to make diabetes into some obscure thing and I want it to happen quickly. It will cost money. Which is why, despite the awkwardness of fundraising we do it year after year. Aside from providing the diligent care and attention that diabetes requires this is really the only thing we have the power to do. We are humbled by and grateful to all who have helped us do it. This Sunday, we will walk for Sam and for the dignity and peace that every human being deserves. We love each and every one of you who “walk” with us every day in this journey to create a better future for our son.

Spring for a Cure

On Thursday evening, Jon and I attended JDRFs annual Spring for a Cure gala at Metropolitan Pavilion. The highlights: lemon basil margaritas, scallop ceviche, eileen's cheesecakes and a thousand people at $100 each raising money for Juvenile Diabetes.

We were actually excited for a night out this year. The first time we went to SFAC Sammy's diagnosis was still kind of raw. There was an exhibit at the event made of insulin bottles that still makes me wince when I think about it. If it wasn't our first night out it was the second or third at most and we called every hour.

A few months later we got our first team together for the Walk to Cure Diabetes. When I got out of the subway at Battery Park and saw thousands of people with their team shirts on I immediately started crying. I remember saying, "Oh my God. All these kids... all these families have diabetes."

On the days between the Walk and Spring for a Cure, I am not overly focused on these other families. Sam is the only kid in his school with diabetes so it's not that common for us to talk to other parents in this unique language. When we do encounter another family there is often an immediate connection. Jon says it's akin to the big blue whales that travel the oceans alone until suddenly they find one of their kind.