Friday, March 5, 2010

Mrs. Lilley Goes to Washington!


Insulin Pump

Many of you know by now, that my son, Edward, was diagnosed with Type 1 diabetes 8 years ago when he was 12. In these short, but life changing 8 years, tremendous strides have been made for Type 1 diabetics. Edward, and thousands like him have profited by the research in physical, tangible ways. The pump alone has changed the lives of so many with it's high tech ability to infuse micro drips of insulin all day and night. This gives Edward extremely tight control, which helps ward off complications further down the road. Research continues to be the key in our quest to find a cure. Research dollars have to be gi-normous to continue to see such great progress. The Juvenile Diabetes Research Foundation was started by Mom's, just like me, in 1970. Here is a quick overview of what JDRF is:

'JDRF is the leading charitable funder and advocate of type 1 (juvenile) diabetes research worldwide. The mission of JDRF is to find a cure for diabetes and its complications through the support of research. Type 1 diabetes is a disease that strikes children suddenly and requires multiple injections of insulin daily or a continuous infusion of insulin through a pump. Insulin, however, is not a cure for diabetes, nor does it prevent its eventual and devastating complications that may include kidney failure, blindness, heart disease, stroke, and amputation. Since its founding in 1970 by parents of children with type 1 diabetes, JDRF has awarded more than $1.16 billion to diabetes research.'

I became involved with the Rhode Island Branch of JDRF and quickly fell in love with Jenny, Mary Ellen and Nazira. Little by little, I was feeling my way to see 'where I fit best' within the organization. For the past year, I have taken on the role of JDRF Advocacy Leader. I work as a liaison with the JDRF office in Washington, D.C., representing the State of Rhode Island. I set
up meetings with our congressmen and senators to talk about the serious issues involved with the daily health care of a Type 1 diabetic. The D.C. office hosts an annual event they call 'Government Day'. It's more like, 'Government Few Days'. They fly the delegates in from all over the country and the action begins! We will be meeting not only one another for support, but the excellent staff from the D.C. office, top scientists, doctors, PhD.'s, and Alan J. Lewis, the CEO of JDRF! They will be turning us loose on the Hill and in the halls of the Senate to meet with our respective congressmen and senators. I'm leaving on a jet plane tomorrow, thankfully, no snow anywhere in the forecast!!

I am blessed and honored to be included in this dynamic community. As a whole, we continue to pray for a cure as the research continues. I will be away from the computer for a couple of days, although I will certainly have access. I'll keep you posted...

Life is interesting...yes?

7 comments:

WillOaks Studio said...

Great! That sounds both serious AND fun all rolled into one trip!! (I love D.C.) Best wishes for achieving more milestones in pushing along Diabetes reseach!

Jennifer Robin said...

You are one amazing lady, Amy. Godspeed.

The Muse said...

I just returned from DC ! Oh goodness...go get them girl and spread the word. You are a powerhouse :) and a mom on a mission!

Life is Grand! :)

I retweeted (safe travels, Amy)

Beadwright said...

Diabetes runs in my family with the men. My brother Vince, now 45, was diagnosed at the age of 6 years. He has had a pancreas/kidney transplant and last year had to have his left leg amputated. Another of my brother's also had diabetes. Last year he got the pump and as you say it has changed his life. It is a terrible disease. Good for you for getting involved.
Nicole/Beadwright

Azure Islands Designs said...

Wonderful work Amy...we do what we can each and everyone!!!

I know you are the most perfect Advocacy Leader...besides being a wonderful,caring, kind person, you are a mother who's son has Type 1 diabetes how could you not be!!!
I think sometimes people don't take certain diseases seriously enough...often because they don't know enough about the disease.
Safe travels Amy...
Cheers

Amy Lilley Designs said...
This comment has been removed by the author.
Amy Lilley Designs said...

Karen it was serious and fun...I saw some old friends, and made some new ones over the past couple of days...w/ all the research we really do believe that the brilliant scientists WILL find a cure!!!

Thank you Jennie...there are many amazing Ladies out there advocating for Type 1... I am blessed to be in their company...it was a wonderful trip!!!

Ms. Muse, I think we all know to WATCH OUT for Mom's on a mission...it was productive, engaging, interesting, enlightening, exhausting (I'm still in my pj's...)...so glad I had the opportunity to go!!!

Nicole...wow, what a story you have...so you totally understand the serious complications...the pump really is a wonder, but the researchers are determined to make it even better, to reverse some of the complications which do occur and to ultimately, of course, find that cure...JDRF has brilliant researchers on the case...be encouraged...all the best to you and your family...:)))

Heather, thank you so much for your kind words...as I said to Jennie, there are so many Mom's across the country advocating their hearts out..many have been at it longer than me and they were so encouraging..all in all, I am humbled, yet energized (tho EXHAUSTED) by the 4 days I spent in Washington...big hugs...(maybe one day in person...to ALL the Ladies...XXXXXXX)