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!
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| Meeting with Congressman Roger Williams |
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| 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.
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| 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.
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| 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.
www2.jdrf.org/goto/FuseAATeam
Rhonda
