JDRF’s Annual Conference: Putting you there

June 13, 2012By 2 Comments

It isn’t everyone who gets a chance to attend JDRF’s Annual International Conference. And yet, I’ve been lucky enough to attend a number of times. I even got to Chair it back in 2006. I had not been in a few years, so when I got the chance to go back again this year, I was excited.

Because everyone needs a boost. Everyone needs a reminder. Everyone needs almost a week surrounded by people who don’t just talk to the talk but walk the walk and ride the ride and fund the research and choose the programs and basically, dedicate their lives to improving the lives of folks with Type 1 Diabetes.

I’ve always been a believer not of just letting the good feeling I’d get at this event “trickle down,” but rather paying it forward, since the folks in the field for cure advocacy are not below anyone: I’d argue that the mom or dad or person with diabetes or just plain nice friend making things happen back home are the very backbone that holds up this mission toward a cure. So I always made a point of sharing, and sharing far and wide. Now I have my lil ole blog to use to share, so here goes: your taste of what happened in Washington DC last week. Hope it inspires you to keep on keeping on. Because until we change this world, we have absolutely no other choice.

Day One: Up and Running: I got there early, since I love wandering around DC. But from the time I walked in the door of the hotel, I knew I’d not be doing much wandering. Because everywhere I looked, I saw Friends On The Mission. Staff members not just from around the nation but around the world (and I’m pretty darn lucky. Since I get to go to chapters all over the country and speak, I get to know the staff really, really well.) Volunteers on both a national level and local level (each chapter sends one, sometimes two, key volunteers to AC. The bonding that goes on is remarkable). So rather than walk around and view monuments, I hung around and caught up with true Monuments to Dedication: staff and volunteers. By the time the evening came, I was already feeling the love, and remembering how many, many people work hard to cure my child each day.

Dinner that night was the “Legislative Dinner,” at which lead volunteers review the work done in advocacy over the past year and then help us get ready for our hill blitz the following day. This year’s Annual Conference Chair, my dear friend and close D-Mom Cynthia Ford, opened things up with some moving words. We all celebrated the amazing Promise to Remember Me meetings over the past year, and refreshed ourselves on what we needed to make happen on the hill the next day.

Then we went to the bar. Because that’s what we do. I know, it sounds trite. But at the bar, we all loosen up, catch up on life, introduce newbies to others and just plain bond. I love that bar time. Of course we cut it short this night since we had a long day ahead.

Day Two: Storming the Hill: First of all, I absolutely love going to Capitol Hill for JDRF. The first year I ever did it, 2000, I remember feeling giddy. Sure, in my state (Massachusetts) there isn’t much you have to do to get our elected officials on board (because they ROCK!), but over the years, I’ve had my times of battling for what we need. I was lucky enough to be named Chairmom of JDRF’s Children’s Congress in 2005, and then served three years at the National Volunteer GR Chair, overseeing all hill visits and the like. So going to the hill is not new to me. And yet, each time, it just speaks to me, not just as the Mother of a child who needs a cure, but as a citizen. It’s flipping awesome.

I was lucky this year to have a JDRF Intern, Christine Melhorn, along with me. Christine is 20 and has had T1D since she was three. She went to camp with my daughter, and had never been on the hill before. Our first meeting was with my own Congressman Bill Keating. Rep. Keating sat us down in his back office – the very same office John F. Kennedy occupied as a Congressman.  The room was filled with memorabilia and kept very much to the same décor as it was then. We sat there speaking with him, marinating in history.

I handed Rep. Keating a gift: a framed photo of him with a group of PWD I’d brought to meet him at a “Promise to Remember Me” meeting in Boston a few months prior.

The group -- and the photo -- that inspired Rep. Keating. It now has a proud spot in his DC office

He looked at the photo and smiled. And then he said this:

“You know, I remember that day so well. It hadn’t been the best morning. It’s hard legislating right now. It can be so frustrating, just trying to get things done. And then I walked in that room and met these kids.” He pointed to the photo. “This is what this country needs. These kids and young adults were so well spoken, so determined, so honest and so smart. You know, we need them not just to help clear the path to a cure, we need them for a better America.” He looked up from the photo, at me and Christine and smiled. “That visit completely changed my day. Thank you for this amazing reminder.”

That has to make you want to do a Promise Visit next time around, right? Not only did those folks influence funding for research, they boosted the spirit of a leader. Rock on, JDRF advocates.

Next we met with Rep. Jim McGovern. Christine was with me again, as was JDRF’s New England Executive Director Amy Montalto. Rep. McGovern has long been a loyal supporter of diabetes research in the NIH. He needs no convincing, and probably has a busy day. And yet, he took the time to sit down with us and listen. I asked Christine to tell her story. She took a deep breath and dug into it. This was the first time she’d ever told her story on Capitol Hill, and as she spoke about how much her parents had done for her, she choked up. And cried a bit. Amy immediately handed her a tissue and hug, and Rep. McGovern said to her, “Of course you are emotional. This life you’ve championed is a big deal.” We left with a promise, to Christine directly, of continued support.

As we walked to our next meeting I explained to her how it still takes me off guard. It’s one thing to live this life with T1D. It’s another to find yourself on Capitol Hill advocating for it. It’s emotional, and it should be. Her parents would have been so proud.

We had a few more meetings, and then wrapped up our visits with a visit to my ole buddy Sen. Scott Brown. (Remember this? And then this?)

Sen. Brown walked into the room and looked around, and before even shaking my hand said, “Where’s Lauren? I was looking forward to seeing her.” I told him Lauren was at home working, and that she was planning a visit some time this fall once she was back in DC for school. I introduced Christine and Amy, and we all sat down with two of his key staff members. While I already knew Sen. Brown plans on supporting all we need this year, I explained that Christine had never told her personal story to a Senator. Busy as he is, he asked her to share her story, and listened with interest. We shared a few laughs, I promised to keep his staff up to date on what we needed moving forward, and they promised to respond.

Amy Montalto, Christine Melhorn, Sen. Scott Brown and me

That was it. You know, sometimes I wish for a fight in hill visits (and when I was chair I used to get send on some), but it takes work to keep our elected officials up to date and on our side. We did just that. I told Christine to feel great about her day: she’d just made lives better for every person with T1D in her home state. She represented them well.

That night we celebrated our corporate sponsors with a dinner, and then heard a motivational speech by Patrick Gould, a young man with T1D who has three more siblings with it (and four more without it! And his mom looks like a rock star. Wow). He gave us our “JDRF Moment,” the moment each year when I think “Why don’t we have a waterproof mascara company sponsor us too?” I skipped the bar that night since we had a long day again the next.

Day Three: Updating where we are at and where we will go: In past years, this day always had a lot of flash. And elaborate set design, cool graphics and production lighting. It was great, but this year, JDRF offered a stripped down version. But only in the visuals. And I thought that was a great thing.

JDRF CEO Jeffrey Brewer, along with key national staff, updated all on where we are at and where we are going, and most of all, what we all need to do to keep us moving toward our goals. It’s has not been an easy time for most any charity, but JDRF is doing relatively well. However, we can do better.

Brewer touched on some of the key points: how we’re going to work toward raising even more, and why we focus on “treat, prevent and cure.” To paraphrase a great line he said about those who question that three-pronged approach, he said:

I don’t see why I have to choose between better treatments or a cure. Why can’t I have both?” Good point.

I liked what I heard, and found myself thinking, “Yep. We are still moving forward. Things are progressing.”

The afternoon included research updates, a town hall when you can ask questions (and I asked everyone in the room to pull out their smart phones and donate to my ride – tee hee).

That night is the final night dinner when the International Volunteer of the Year and Staff of the Year awards are presented.

This is kept top secret. The people winning have no idea it’s them, even though their family has been flown in to surprise them. Well, this year’s  Staff of the Year, the amazing Amanda Foxman of Delaware (Amanda. I’m still sorry about the suitcase incident LOL!) is a single mom. She had no idea her three sons were brought in to surprise her. So when she called a friend at her son’s soccer game and the friend said he was not there, and then she called the person who was to bring him to the game and they did not pick up (because they were in DC with the kids waiting for the surprise), she ran to her boss and told her “My son is missing. I have to call the police.” So, needless to say, they clued her in. Great, great story though!

I’ve been lucky enough to work with Amanda since I spoke at her chapter annual conference and I will tell you, she is everything JDRF should be and is: she’s funny, smart, flexible, quick on her feet, compassionate and determined. Well deserved.

Next, the Volunteer of the Year Award. They asked each person who’d received this prestigious award to stand and be honored. I looked around the room at the handful of people standing and clapped hard. How great – -these people are so inspirational. Then Amy, my ED, tapped me on the shoulder. “Um, Moira. Why aren’t you standing?”

Oh, right. I was shocked to be given that award in 2007. Go figure. I stood, blushing, thinking still of how much more I could and should do.

The award went to Randie Harmelin and her husband Robert – two amazing folks I’ve been lucky enough to work with and volunteer along side for years. Their walk team is one of the best ever, their outreach work is remarkable, and their dedication to their chapter could be a benchmark for all of us. I cried.

Then, off to the bar for the final night. This is the night we close it down. Not because we want to drink in Grey Goose, (and some of us do) but because we want to drink in one last long drink of the team spirit we have. I hated to go to bed and see it end.

D-Mom's in the Bar. Bonding, laughing, sharing and re-upping our determination to change the world.

But as I flew home the next morning, I was all smiles. How blessed I was to be in the middle of all that passion and determination. How lucky I am to have found the JDRF family. How inspired I am to go back home, share the feeling and try to do more.

Thank you for that, JDRF. And to all of you who were not there, I promise: those of us who were are more than willing to share the feeling. Just name the bar and we can meet up. But be ready: we’ve got plenty of calls to action to share. and to JDRF: I promise that I heard mine. And I’m on it.

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  1. Beth McCrary says:

    I made Moira’s blog! I made Moira’s blog! Great recap of our time in DC! Now the real work begins back on the homefront in each of our chapters…motivating everyone to call, email, or fax their Congressmen and tell them why it’s important to renew the Special Diabetes Program for 2013. #prevent.treat.cure

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