Spare A Rose

Life for a Child

Monday, April 4, 2011

Guest Post: Bridging The Gap ~

I walked in the door late last night from my trip to LA & the Medtronic Diabetes Advocate Forum/#medtronicDAF. I have boatloads to share - FYI, be on the look out for the Medtronic press release & Carelink being MAC compatible any second (like as in this week) now!

But unfortunately, yours truly has a full day of work & a full inbox, so my post won't be up until tomorrow! Lucky for you (and me) Cherise Shockley, brain child of the Wenseday night twitter chat #DSMA (diabetes social media advocacy,) Blog radio co-host of DSMA Live, Continuing The Conversation, and all around fantastical member of the DOC, was kind enough to write a wonderful guest post about what she learned at (#jdrfgovday) JDRF's Government Day. Thanks & TAKE IT AWAY, CHERISE!

######## Thank you Twin (Kelly) for asking me to guest post today. I am not sure what I am going to write about because I am currently having issues with sitting at the computer to blog about things happening in my life. Sad, I know?!?!

A few weeks ago, I had the opportunity to attend the JDRF Government Day with a few other diabetes/patient bloggers and huge diabetes advocates in social media. I was honored and blessed to be surrounded by family that felt the same passion for advocating for diabetes and for the people who live with it, young or old and Type didn'tt matter.

We discussed a lot of different issues. I learned a lot about advocating not only for people living with diabetes but I learned a lot about advocating for the technology and the science needed to help make our lives easier.

I learned that the Juvenile Diabetes Research Foundation is a great organization that started off as a huge support system for children living with diabetes and their parents but ended up being “cure” focused and lost track of the children as they grew up.

I also learned, that the JDRF is making an effort to go back to their roots but with an added twist-see, not only will JDRF focus on support for children but also for adults and still continue to find ways to help us live with diabetes, some day prevent it and waaaaaaaaaaaaaaaaaaayyyyyyyyyyyyyy down the line if the good Lord’s willing, a Cure.

I also learned that Parents of children with diabetes are NOISE MAKERS when it comes to diabetes. I learned that they have a big heart and mean well but when it comes to their children, they do not play and do not take no for an answer! They ROCKED Capitol Hill with their stories and children’s stories-some were heart breaking, empowering and uplifting. I saw and heard a lot of the parents speak about their kids being burnout, hated diabetes, didn’t let diabetes stop them or some lived with diabetes a lone and felt comfortable doing it!

I also learned that parents cry a lot and they want to stop this disease but at the same time find ways to help them live with it. Sounds a lot like the Diabetes Online Community? Doesn’t it?

I was glad to hear the JDRF and ADA work together on a few government related issues, meet and shake hands with a lot of people that understood diabetes, eat cupcakes, sit on an awesome panel, hang out with my family, get lost on the Metro, sit next to an awesome Pilot and flight attendants and most importantly represent the Diabetes Online Community.

I believe Jeffery Brewer and the JDRF staff will try their best to bridge the gap between children, teens and adults living with diabetes.

We have to be patient and figure out how to jump in and lend a hand. We complain about the past. Let’s help fix the problem. Let’s be a part of the solution for the future.

Be Blessed,

Cherise

4 comments:

Penny said...

Great post Cherise. Thanks Kel for having her. As a parent of an 8 year gal with T1, I see the power that we parents have, as a part of the larger DOC. I feel welcomed for this and I have all of you to thank for that. I believe in the future, I believe in changes and I believe that we have lots to share that might lead to the solution.

Meri said...

Yeah, I cried in the shower for years. I think I started every day in 1998 with a cry headache. But we find a way to make life joyful.

I'm so glad you were there to respresent the community! You are such a blessing and an inspriation! Much love to you. :)

Anonymous said...

"I also learned that parents cry a lot and they want to stop this disease but at the same time find ways to help them live with it."

That is me. My son was diagnosed almost 7 years ago at the age of 11. It still breaks my heart and I do still cry often. But, as my son is getting ready to head off to college in the fall, I am confident that he will be just fine...tears and all.

Amy Lilley Designs said...

Hi Cherise...I was in DC as well, representing Rhode Island and had a chance to get to know Kerri a bit...she and our other Advocate, Eileen Bristow, tag teamed one another on the Hill w/ their stories of living w/ Type 1 for so many years, being Moms and what a huge new dimension that is, especially right now for Kerri as a new Mom...Eileen was diagnosed 42 years ago...my son is 21 and was diagnosed 9 years ago...he's doing great...I did a blog post on Gov't Day:
http://amylilleydesigns.blogspot.com

All the best to you...BE WELL!!!!