Monday, June 20, 2016

JDRF One Conference

JDRF One Conference

                At my primary job, we have been working hard to prep for our new long-awaited hospital tower to open in August. Given that, we have a vacation freeze for the majority of July and August as we will be working feverish overtime to put all the finishing touches on the tower and get everyone trained to the new place. Since “Educator” is one of my roles, I have the large primary responsibility to assure around 70 nurses are trained by Opening Day! So, since there is a freeze and we will be so busy, I planned two short vacation trips in June. Needless to say, the planned busy July and August inadvertently created a full and busy June.

            First, Kyle graduated high school on June 6. Two days later, we jet-setted for California to take the three youngest boys to Disneyland and to visit family in the LA area. Fortunately, Diabetes behaved fairly well, but that’s another blog.  We arrived home late on Sunday night, and I spent the next two days at an annual nursing conference…you know…back to that “Educator” role. I thought I would have a few days home after the conference to work, catch up on groceries & laundry, and refilling the hemorrhaging bank account before we leave again.  (This time, we’re boarding a ship to celebrate with the “big boys” on their planned and promised Graduation cruise)  *gasping for air*

            Plans set.  Busy June in order. Very few breaks. Then, a few weeks ago, I received an invitation from my local JDRF chapter to attend the JDRF One Conference in Washington, D.C. I have always wanted to go to D.C. To sweeten the deal, as part of the conference, we were to each take part in Capitol Hill visits with our Congressional representatives and Senators to lobby for support for the Special Diabetes Program and the Medicare CGM Coverage Act. 

            Anyone who knows me knows I can talk a blue streak about two things….Bon Jovi and Diabetes. So, Game On!  Jerry agreed to hold down the fort, and I took off to D.C. on Wednesday!  I was fortunate enough to fulfill a dream to see some of the historical US Monuments…White House, Washington Monument, WWII Memorial, Vietnam Veterans Memorial, Reflecting Pool, the Lincoln Memorial.  I was sweaty with that D.C. summer heat and humidity, but I was beyond excited to be there. I made it back in time to the hotel to clean up for meetings and dinners. Great research updates about the Artificial Pancreas, Smart Insulin, Prevention, Complications and Beta Cell Encapsulation. 

            On Thursday, we all loaded into taxis and rode to Capitol Hill. Representatives for JDRF, many like me who are volunteers, stormed the Hill to lobby for support for Diabetes funding. For my State and area, we visited the offices of John Cornyn, Kay Granger, Roger Williams, and Ted Cruz. At each Senator and Representative’s office, we spoke to their legal health aides, and let me assure you, I have never felt so OLD as we spoke to these bright and receptive aides who looked younger than my oldest child!
Meeting with Congressman Roger Williams
Ready to Storm Capitol Hill 

            Thursday afternoon, Thursday evening, and Friday were spent in more educational sessions and networking with other JDRF staff and volunteers for my state and other states. Since I had a couple more hours to kill, I turned the opposite direction from the hotel and explored a bit more of our Nation’s Capital. Lo and behold, I found the front of the White House!  I thought I was in the front on Wednesday, but I stand corrected.  It was surreal to stand in front of such a historical place that is recognizable around the entire world.
In FRONT of the White House

            Besides education, which I am all about, I think my favorite part of it all was meeting others like me who are passionate about their organization. We all have our own impactful stories…tear-jerkers…and I love to hear each one. I feel less alone when I hear others; I feel liberated when I am able to share our story.

            Also, I never dreamed in a million years I would lobby Congress for anything, so it was an exciting opportunity to go, learn the process, and speak up for my boys, my father-in-law, all other T1D patients, and represent myself, my family, Texas and JDRF.  Being a volunteer for JDRF has truly been the Band-Aid for my broken heart after my boys were diagnosed. Helping those who can help find better treatments and a cure for T1D because this Mommy can’t fix it alone.

            Volunteering for JDRF gives me meaning. Hosting our JDRF One Walk Team has been therapeutic as my boys can feel and SEE the camaraderie for them and all of those afflicted with T1D.  I will Captain the team, until the boys are ready to take over, so that we can raise vital $ to fund education and research, especially for my favorite project, Beta Cell Encapsulation.
ViaCyte Beta Cell Encapsulation device

I serve as a JDRF Mentor, helping new families to not feel so broken and alone upon diagnosis and steer them to resources and involvement that helped me feel hopeful and empowered when I was new to this battle.  Last year, I served as a Family Team Coach to help new and sophomore One Walk families become more successful and engaged.  I knew nothing year one and had to figure so much out; this type of help is vital to teams’ success.  Now, this year, I am Family Team Chair.  For some odd reason, my chapter thinks I am qualified to lead all the other Family Team Coaches as we all aid new and sophomore families through the One Walk process.  And, as I mentioned, now I have had the chance to volunteer to be an advocate on Capitol Hill and attend this conference!

            It is truly an honor to me, and I feel humbled and privileged to be asked to represent for my boys, all T1D patients, my local JDRF chapter, my state.  I guess all I can say is that this organization is the primary source of hope I have that one day my boys will be cured and/or they will have a fantastic treatment that minimizes the burden of their disease and reduces or eliminates all potential T1D-related complications.  Alone, all I can do is to be the Mommy Pancreas and make sure Diabetes doesn’t beat my Asa and Aiden.  Together, we can beat Diabetes!

            I do it all for them!
            Support us today as we help JDRF turn Type One into Type None.