Advocacy - Recent Threads

What does the Special Diabetes Program funding Mean to you?

Gina — Wed, 02 Jan 2013 20:25:20 GMT

Please share what the SDP means to you here!

Don't know what the Special Diabetes Program is? Check out this link to find out more!

BLOGS! :)

Ashley — Tue, 04 Dec 2012 20:46:24 GMT

Hey there. My name is Ashley. I have been Type 1 Diabetic for 4 years now. I have a blog that normally revolves around diabetic topics and I would love if you would read some of my posts and give me some feedback. Also, I am asking for suggestions for topics! What do you want to hear about?! :) Please leave comments.

Here is the link to the blog: www.iamjuvenated.blogspot.com

I am thinking of posting something relating to advocacy this week!

Type 1 Diabetes Documentary Film

Nick — Fri, 24 Feb 2012 21:18:52 GMT

JDRF supporters!I didn't know how else to get the word out, but I am a recently diagnosed type 1 diabetic and I am putting together a documentary video focusing on life with type 1 diabetes.
I'm asking all of you who know a diabetic, are a diabetic or just want to help out to post a short VIDEO RESPONSE to the question below. With your video responses, I will be able to complete the documentary and upload it to places like youtube and Juvenation and maybe even the JDRF website with their permission in order to spread awareness and educate the public about diabetes. I'm a newly diagnosed type 1 diabetic, and I'm appalled at the lack of knowledge and awareness surrounding type 1 diabetes.
Once again, I can only use VIDEO RESPONSES!!!

The questions is:
What is the first thing you think of when you hear the words "Type 1 Diabetes?"

Spread the word! The more people that give video responses, the more accurate and complete the documentary will be. We will be able to provide a better picture of what life with type 1 diabetes is really like and remove the stereotypes and misunderstandings. Awareness is key because it leads to further action!

Nick Camarda

Diagnosed with type 1 diabetes: April 14, 2011

I am Jon from Seattle.

Jon — Mon, 18 Jul 2011 17:49:10 GMT

I am new here. I have 28 years with type 1 diabetes, and a wealth of expereience and knowledge about this disease. Diabetes "greek deifinition" means "to run like a siphon". i am still making my inital connections to groups, people etc. I will be checking in and out at various times throughout my busy days. thanks for this great site. Jon

New Here, have never been so passionate about something............

hopefornathan — Sat, 23 Apr 2011 04:09:11 GMT

Hi, My name is Jamie, and I am new here, found my way here via a link on Facebook. Two years ago at the ripe age of only six years old, my cousins son (My "Little Buddy") was diagnosed with Type 1Diabetes, in was in and out of the hospital a lot those first few weeks, I had never been so worried in my life. There is a good reason Nathan is my "Little Buddy" from the time he could walk, Nathan has never been far from me during family get together's. He is doing well now, he is eight plays soccer, and t-ball and involved in the boy scouts. As I said in my subject line, I have never been so passionate about something as I am about JDRF and the work they do. I love finding new ways to learn about this Foundation.

Call to Action for Minnesotans!!

Tauni — Tue, 19 Apr 2011 16:44:53 GMT

Urge Governor Dayton to Veto Anti-Stem Cell Research Legislation

The Call to Action

CALL and/or e-mail Governor Dayton: Please veto any bill that contains language that bans or criminalizes therapeutic cloning research.

Telephone: 651-201-3400 Toll Free: 800-657-3717

Or email: http://mn.gov/governor/contact-us/form/

FORWARD this action alert to your e-mail address book.

What to Say

· Please veto any bill restricting or criminalizing therapeutic cloning or SCNT (somatic cell nuclear transfer)

· Such a ban would represent a devastating step back for medical research in Minnesota.

· Therapeutic cloning is not reproductive or human cloning

· The Current legislation, while claiming to only ban human cloning, actually bans therapeutic cloning, too.

· Research in therapeutic cloning shows great promise for millions of people with Diabetes, Alzheimer’s, Muscular Dystrophy, Multiple Sclerosis, Parkinson’s and other diseases.

· These bills are anti-business, anti-research, anti-patient and anti-hope. That is not the Minnesota I want to live in.

If you can do more

· Call your Minnesota Senator and Representative

Tell him or her to please vote “NO” on any bill that contains language that bans or criminalizes therapeutic cloning research. (see above talking points)

Go to this site to find contact information for your Senator and Representative http://www.leg.state.mn.us/leg/legdir.aspx

· “Like” www.facebook.com/jdrfminndakotas on Facebook so you can share this alert with your friends and family.

Minnesotans: We need your voice!

Tauni — Thu, 31 Mar 2011 15:14:22 GMT

As you may be aware, Minnesota legislature is currently considering some of the most dangerous legislation we have seen designed to halt one key area of diabetes research. The legislation seeks to criminalize and defund the research and the scientists doing it, which will lead to them leaving the state, taking resources, leadership and jobs. Scientists and doctors around the globe believe that stem cell research has life-saving and life-enhancing potential. Progress in this area of research could cure diseases like type 1 diabetes, cancer, paralysis, and spinal cord injury, Alzheimer’s, Parkinson’s, and other devastating conditions.

NOW IS NOT THE TIME TO STOP GROUND-BREAKING RESEARCH!

Please take a few minutes and write your congressman and tell him or her save the practice of therapeutic SCNT research in Minnesota!

Use this link to easily find your representative:

https://writerep.house.gov/writerep/welcome.shtml

SAVE RESEARCH, SAVE LIVES!

Tauni — Wed, 30 Mar 2011 16:01:54 GMT

Now is not the time to eliminate ground breaking scientific research.

As you may be aware, Minnesota legislature is currently considering some of the most dangerous legislation we have seen designed to halt one key area of diabetes research. The legislation seeks to criminalize and defund the research and the scientists doing it, which will lead to them leaving the state, taking resources, leadership and jobs. Scientists and doctors around the globe believe that stem cell research has life-saving and life-enhancing potential. Progress in this area of research could cure diseases like type 1 diabetes, cancer, paralysis, and spinal cord injury, Alzheimer’s, Parkinson’s, and other devastating conditions.

Therapeutic Cloning is not REPRODUCTIVE CLONING. No one in this debate is in favor of reproductive cloning.

Therapeutic cloning, known as SCNT – somatic cell nuclear transplant, takes an unfertilized egg and adds DNA from a patient to create a stem cell line. These stem cells can be used to replace damaged tissues or cells, including islet (insulin) cells. The cell line is compatible with the patient making it potentially more affective and free of rejection risks.

JDRF does not support reproductive cloning, which seeks to replicate an entire organism (like Dolly). Therapeutic cloning and reproductive cloning are not identical. A law in Minnsota already addresses a ban on human reproductive cloning. However, these bills seek to tie them together.

To help the legislature know the differences in these types of research and to save the practice of therapeutic SCNT research in Minnesota a press conference is being held to your chance to show support of scientific research and therapeutic cloning which is helping to find cures and treatments for diabetes. We need your voice to help convey the importance of this research.

The Save Research, Save Lives event will be held:
Thursday, March 31
11:00-12:00
State Office Building (across the street from the Capitol) - Room 181

See below for more information on the legislation and the event:
The Bills: SF 760 Health and Human Services Omnibus bill (https://www.revisor.mn.gov/bin/bldbill.php?bill=S0760.2.html&session=ls87
section 25.145.4221) and SF 924 Omnibus higher education (https://www.revisor.mn.gov/bin/bldbill.php?bill=S0924.1.html&session=ls87
section 10.145.4221)
SCNT research: You can visit JDRF’s Web site to learn more http://www.jdrf.org/index.cfm?page_id=101083
Use this link to learn about Parking at the Capital complex http://www.admin.state.mn.us/pmd/4-2_public_parking.htm

$300 Million for Type 1 Research!! What a victory for our advocates!

Tauni — Thu, 09 Dec 2010 19:55:27 GMT

Today, Congress passed a multi-year renewal of the The Special Diabetes Program. Thanks to everyone who encouraged Congress to take action!!

Special Diabetes Program

Kim — Mon, 15 Nov 2010 04:18:27 GMT

Hey everyone - I noticed we don't have a lot of conversation going on in this group, so I thought I'd start one.

Is everyone aware of the SDP vote going on this week? We aren't sure what day the vote will be on yet, but I hope you'll all make a call to your local representative of Congress to urge them to vote to continue the program. SDP makes up about 35% of all diabetes research funding in the US each year. It's scheduled right now to expire in September of 2011, and losing that funding will dampen progress in things like the Artificial Pancreas clinical trials. I don't know about you guys, but I want that thing getting to market as soon as possible. Like, yesterday.

If you aren't already signed up as a JDRF Advocate, go here to sign up. We should all be getting an email this week with an 800 number to call on this one.

Diabetic Teenage Girls in Need

Parksplace — Wed, 21 Jul 2010 16:35:15 GMT

There are approximately 1,000 Type I Diabetic children in U.S. foster care at the present time, not including those in other dire straits. These are children without support networks, who will age out of the foster care system and, 25% of the time, be incarcerated within two years, who only have a 3% chance of earning a college degree compared with almost 30% of the general population.

Up until now, our nation's health care and social system has failed to serve this population, but the Cyndie Parks Memorial Home for Girls is working to change that.

We are working to open the nation's first home exclusively for Type I Diabetic girls, ages 14-18, who are in foster care already or who have an unstable home life and need intervention. The home, a 501(c)(3) organization completely supported by private foundations and individuals, will be a safe, uplifting environment for the girls to live while they transition from childhood to adulthood. They will learn self-care and transition skills to help them succeed in life, because every child, no matter what might stand in their way, deserves a chance to overcome and fulfill their potential.

If you want more information, please visit our website or Facebook us!

JDRF ADVOCACY WEBSITE

Lorraine/Maurice's Mustangs — Wed, 30 Jun 2010 01:54:10 GMT

Hello everyone,

I am sure you are all aware of this website but I just wanted to send you a reminder of another way you can get family and friends involved in Advocacy!

http://stw.jdrf.org/Default.aspx

On this site you can join and send invites to friends and family to join and spread the word too!

Of course there is the Twitter Advocacy page get connected to that too!

http://twitter.com/JDRFAdvocacy

Get involved today!

Lorraine

New Advocacy Intern

Leah — Thu, 13 May 2010 18:11:46 GMT

Hey everyone. I'm the new Advocacy/Government Relations Intern at the Kentuckiana chapter for the JDRF. Looking for new and interesting ideas for advocacy efforts. Does anyone have any new ideas or want to share some events they've already participated in??? Thanks.

Become an advocate

Jason — Fri, 11 Dec 2009 04:44:55 GMT

Just one way of getting involved.

http://takeaction.jdrf.org/site/PageServer?pagename=Registration_Page&JServSessionIdr007=eejx0hmbv4.app7b

Also, here is something newsworthy:

On December 10, 2009 the House of Representatives passed, by a voice vote, H. Res. 35, a resolution urging increased federal funding for type 1 diabetes research. Introduced by Rep. Gene Green (D-TX) and co-sponsored by 101 House members, this non-binding resolution highlights the economic toll diabetes places on our society and the serious complications faced by people with type 1 diabetes. The resolution’s support for increased federal research funding is aligned with the six goal areas established by the National Institutes of Health (NIH) to guide type 1 diabetes research focused on the reduction, prevention, and cure of type 1 diabetes and its complications.

H. Res. 35 acknowledges the recommendation of leading diabetes researchers to double the current level of NIH funding for type 1 diabetes research. In 2009, NIH provided a total of $433 million in diabetes research. Included in that funding is $150 million specifically for the Special Diabetes Program that Congress currently provides annually though fiscal year 2011. The research supported by this unique program is showing real progress in identifying the root causes of the disease, testing new therapies and treatments and making great strides in our effort toward a cure for type 1 diabetes.

In combination with all the great work being done by JDRF advocates on a daily basis, the House passage of H. Res 35 serves as a critical reminder to Members of Congress of the burden of living with type 1 diabetes and the importance of funding research in the quest for a cure. JDRF’s top legislative priority is the renewal of the Special Diabetes Program so that the NIH can continue large-scale clinical trials and proactively plan next steps to maximize type 1 diabetes research opportunities. Separate legislation (H.R. 3668) has been introduced in the House to renew the program, and the House’s demonstration of support today represents an essential step toward our goal of securing additional funding for the Special Diabetes Program beyond 2011..

"Remember Me" campaign

BillRuss — Fri, 16 Oct 2009 17:15:52 GMT

How can I sign up to participate in a "Remember Me" event with my congressman? There is a place to sign up, that states that "A Promise Campaign Coordinator will then contact you to help set up your meeting." but that never happens, I signed up several months ago. How do I follow up? Do I just call Rep. DeFazio's local office?

ADA vs. JDRF

Briley — Wed, 14 Oct 2009 01:02:01 GMT

For as long as I can remember, I have been doing various fundraising and advocacy items through the ADA. In my last year of school, I took an advocacy class to complete my early childhood degree. Since children are the most vulnerable population and have no voice when it comes to getting change, it is a vitally important part of my degree. For my part of this, I used a lot of my advocacy time with the ADA. The reasoning is as simple as it is much easier to find and there is much more information to be found. My question is, why is there so little to advocate for in a public forum on JDRF. I understand that the focus of JDRF is on children, which I love, but for those of us who grew up and are now adults and can speak to get change for children and for the benefit of others with type 1, why has JDRF made this so difficult?

Pilot living with Type 1 taking action for others

John — Thu, 06 Aug 2009 06:24:57 GMT

Hello everyone, my name is John McCarthy, I am a 20 year old college student living in St. Louis, MO. Last November (2008) when I was 19, I was diagnosed with type 1 diabetes. My major in college is flight operations management, it basically means that I fly airplanes and run corporate flight departments. I am not going into my whole story here. I just had a God given dream, and inspiration from a young man by the name of Nick Jonas. No I have not met him yet, although I would love to becuase he has the stage, and I have the ideas on how we can reach millions of people. The main reason I am making this post is becuase I fly airplanes and when I found out I was diabetic it had immediately voided my medical with the FAA After battling for 8 months with the FAA on getting my medical cleared for me to fly again, I finally won. I am now starting a Diabetic Aviation Association. I am making a wesbite/forum, for pilot's who are wanting to regain their medicals. This will also be for anyone who is looking for support, inspiration, or a place to be a pressure relief valve. I am currently working on getting a link for the website (which isn't completed yet) for the JDRF to raise money and awareness for a cure!

dont know what to do

moxrox890 — Mon, 03 Aug 2009 01:34:02 GMT

I signed up to become an advocate a couple of weeks ago and i just turned 18,i really dont know about walking into a legislaters office and just start talking about my personnel experience J.D.it kinda scares:)Ive never really stood infront of a bunch people trying teach and convince them on J.D. but i really want to helpdoes anyone have any ideas? or suggestions/

Ideas anyone?

2sweetboysmom — Fri, 03 Jul 2009 12:30:01 GMT

Our family and friends are entering a float in a local parade again this year. Last year, the theme was 1970's, and we created our float with colorful JDRF shoes and played the song Boogie Shoes during the parade. We distributed info about our areas upcoming walk to cure diabetes, as well as info about JDRF and type 1 diabetes. We like to capitalize on any chance we have for advocacy, awareness and action relating to type 1 diabetes. This year, we are participating in the parade again, but the theme has us stumped. The theme is OIL 150, as a tribute to the fact the first oil well was drilled in our area 150 years ago. Our chamber of commerce suggested that we do anything having to do with events that occurred 150 years ago. Ugh! I would like to do something with more impact as it relates to diabetes. Some thoughts were: 150 faces of children, 150 reasons for a cure, the number 150 as it relates to diabetes management (150 finger sticks in a week, 150 insulin administrations in a week, etc). As you can see, we're kind of stuck! Please, please give us some ideas for great visual impact, as well as awareness! Thank you for your help!

CGM was only approved for 1 month....need support to fight Horizon BCBS of NJ

paulacd8 — Sun, 28 Jun 2009 04:43:53 GMT

So I just found out that my CGM sensors may no longer be covered...I only had 1 month worth of sensors covered by my health insurance. I am interested in filing a class action law suit against Horizon Blue Cross and Blue Shield of NJ because I believe that it is illegal to approve coverage for an item and then deny coverage immediately after approval. If there is anyone who has this insurance and is interested in joining my law suit, please contact me!

Thanks, Paula Paulacd8@aol.com

What makes a good add??

Anonymous — Wed, 24 Jun 2009 04:56:32 GMT

What makes a good add? What makes people stop and really listen to what we have to say -- to realize what diabetes is and get them to help?? Feel free to add, because I haven't a clue :)

One thing I was thinking was impact.
I came up with some sort of "handouts" I suppose you'd call them a while back, which focused on impact and trying to get people to realize just how serious this is. Any ideas?

Take Action: Embryonic Stem Cell Research!

Rachael — Wed, 29 Apr 2009 19:18:33 GMT

From JDRF Advocacy in Action...

We need you to take action! The NIH has released draft guidelines for embryonic stem cell research and is currently gathering public comments. Please click here or on the link below to review and submit the prepared comments, provided below, in support of these guidelines in three simple steps. Additional background can be found below.

Stem Cell Research Guidelines Comment Form

Click here to be directed to the comment form, provide your name and select ‘Self’ for Affiliation. (JDRF, as an organization, will provide comments directly to the NIH.)
Copy and paste the text in the table below into the Comments sections, provide the security check ID on the form and click ‘Submit Comments’.
Once you have completed steps 1 and 2, please click here to let us know you have completed the action so we can track the number of JDRF advocates participating.

Be sure to pass this message on to your family and friends, we need to generate as many comments as possible to support our efforts for a cure!

Comment Text (please copy and paste into Comments section)

I support the Administration’s expansion of the federal policy on embryonic stem cell research and the National Institutes of Health’s (NIH) draft guidelines to govern this important research. For those of us with a personal connection to type 1 diabetes, these actions have renewed our hope for a cure.

The Administration’s Executive Order on stem cell research restored scientific decision-making to its rightful place at the NIH. In these guidelines, the NIH has demonstrated its capacity to formulate a research framework that will unleash the potential of embryonic stem cell research while maintaining the highest safety and ethical standards. I would encourage the NIH, however, to grandfather into this policy stem cell lines that currently receive federal funding as well as those derived privately under the prevailing ethical guidelines so that NIH can fund research using these existing lines.

Research should be vigorously pursued on all promising stem cell sources that could potentially lead to a cure for type 1 diabetes. While embryonic stem cell research is still in its early stages, this research has already yielded impressive results in our continuing effort to find a cure for type 1 diabetes. Recent research suggests that embryonic stem cells can be differentiated to produce the insulin-producing beta cells that could reverse the course of type 1 diabetes.

We do not yet know which stem cell sources may ultimately lead to a cure or be the most clinically useful or practical for patients with type 1 diabetes. It is clear, however, that the more knowledge we gain about embryonic stem cells, the better we can assess the full therapeutic potential of all stem cell sources. These draft guidelines allowing federal funding for embryonic stem cell research using excess embryos from fertility clinics will ensure that this research matures and its potential is more fully realized. I commend the NIH for allowing this important research to expand in a scientifically and ethically appropriate manner.

Please let us know if you have any questions. You can send us an email at advocacy@jdrf.org.

Thank you!

JDRF Government Relations

Additional Background: Last month President Obama signed an Executive Order, which lifted previous federal funding restrictions on stem cell research. Although this action was a great victory for those of us in search of a cure for type 1 diabetes, our job is not done!

As part of the Executive Order, President Obama instructed the NIH to issue guidelines governing this research. You can view the NIH’s draft guidelines online by clicking here. The draft guidelines would permit federal funding for research using stem cells derived from embryos created by in-vitro fertilization and no longer needed for reproductive purposes. The draft guidelines also would ensure that embryos utilized for embryonic stem cell research were donated under the highest ethical standards. While JDRF supports these guidelines, we would encourage the NIH to extend funding eligibility to currently-funded stem cell lines and existing lines that were derived according to prevailing ethical guidelines.

Juvenile Diabetes Advocates on Twitter

Grant — Fri, 20 Mar 2009 03:58:57 GMT

You can follow the organization of the biggest bike relay in the world.
The play by play as a team of 5 organization the ACCU-CHEK Cyclebetes Provincial Relay. Our Goal: Deliver on a Promise. Cure Juvenile Diabetes.

Get all the updates on twitter at http://twitter.com/AC_Cyclebetes

Can you help me be an Advocate???

RaeRae — Fri, 27 Feb 2009 06:41:50 GMT

i go to a really small school and i am he only diabetic in the school system and thats pre-k threw 12th and i would really like to educate my fellow students and the faculty on what diabetes is. some think they know but are just goin off myths and other unfactual things they have heard and maybe take it to another leval and educate my town and find others in my srounding towns. could someone help me wit this and tell me what the best way of goin about this would be???

discrimation advocacy

Melissa AKA Mel — Wed, 11 Feb 2009 23:09:16 GMT

im just curious how is it that i never knew about this law that required teachers to allow me to test in class when a teacher yelled at me for doing so? how was that justice? i wish i would have known about that law ten years ago that's if it was put in effect ten years ago.