Advocacy

Forum Post: Re: What does the Special Diabetes Program funding Mean to you?

Jeff — Wed, 02 Jan 2013 22:32:00 GMT

Oops! I posted in the wrong place...Special Diabetes Program (SDP) Funding Approved by U.S. Senate

But it is still what I wanted to say. Thanks Gina!

Forum Post: BLOGS! :)

Ashley — Tue, 04 Dec 2012 20:46:00 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!

Forum Post: Re: New Here, have never been so passionate about something............

Jacquie CDV — Sat, 29 Sep 2012 04:43:00 GMT

Boston...are you FROM Boston? I wish i was close by. I'm keeping an eye on The Faustman Lab out of Mass General. http://www.faustmanlab.org/index.html. I think Dr. Faustman's research is the equivalent of The Golden Ticket.

To your point, I also believe JDRF is a helpful resource. However...and I mean no disrespect...JDRF is bound to its sponsors. Some of its sponsors could not possibly benefit by a cure being found for type 1 diabetes and actually might be very HURT by a cure. It troubles me that JDRF would partner with any company that did not share JDRF's purpose for being...that is, to find a CURE for type 1 diabetes.

To add to that, true scientists -- those committed to research and development of a cure for diseases like type 1 diabetes -- are scientists, not PR peoeple. If their research doesn't stand to make big money for a big pharmaceuticals company, the cost of conducting phased clincial trials is often contingent on private donations and fundraising. They don't have in-house ad agencies to generate buzz.

I am thankful for JDRF. When I was a kid, they were in the halls of Congress fighting for me. As an adult, however, I am responsible to be my own advocate ... to educate myself about research going on all over the globe, big or small, and to help get the word out to those who might be relying too heavily on established advocacy groups for info about type 1 diabetes research. If more people knew about the Faustman Lab research, for example, maybe there would be more money available to fund the Phase 2 trials.

That's what I think "advocacy" has to mean to us now. Unfortunately, the closer we get to a cure, the more resistance we may get from those we've previously considered our allies.

Forum Post: Re: Type 1 Diabetes Documentary Film

angel51486 — Thu, 08 Mar 2012 08:30:00 GMT

i totally agree with you andy. and i think if we ban together we can accomplish big things and educate!!

Forum Post: I am Jon from Seattle.

Jon — Mon, 18 Jul 2011 17:49:00 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

Forum Post: Call to Action for Minnesotans!!

Tauni — Tue, 19 Apr 2011 16:44:00 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.

Forum Post: Minnesotans: We need your voice!

Tauni — Thu, 31 Mar 2011 15:14:00 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

Forum Post: SAVE RESEARCH, SAVE LIVES!

Tauni — Wed, 30 Mar 2011 16:01:00 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

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

Tauni — Thu, 09 Dec 2010 19:55:00 GMT

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

Forum Post: Special Diabetes Program

Kim — Mon, 15 Nov 2010 04:18:00 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.

Forum Post: Re: New Advocacy Intern

Gregg Milliken — Fri, 20 Aug 2010 20:33:00 GMT

I always have new Ideas!! congrats on your internship, my wife is from Kentucky!

I am putting several new programs together, being a personal trainer and expert in diet/nutrition, I believe your first move would be a large cooking show!!

You could have experts speak and cook healthy food on out door grills! Imagine 5000 people eating sharing and promoting diabetes awareness!!

All people could learn more about what great tasting healthy food is, there are foods that help diabetics. when I coach people how to eat and live good by knowing what great tasting food really is, it changes their view of life with diabetes!! I am a powerful speaker, If i speak people listen, you need great speakers. Find some and set up a great event... Make it ROCK!!!! GET INSPIRED do something daring lets change the face of diabetes!!

You can contact me at gregg@gfitnow.com

Forum Post: Diabetic Teenage Girls in Need

Parksplace — Wed, 21 Jul 2010 16:35:00 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!

Forum Post: Re: JDRF ADVOCACY WEBSITE

Lorraine/Maurice's Mustangs — Sat, 03 Jul 2010 05:40:00 GMT

Jason,

Thank You I forgot that had one. We need all the exposure we can get.

Forum Post: Become an advocate

Jason — Fri, 11 Dec 2009 04:44:00 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..

Forum Post: Re: Pilot living with Type 1 taking action for others

John — Fri, 06 Nov 2009 06:54:00 GMT

Hey everyone, things are going well for DAA. Everything is in its final stages, the only things left is to find some corporate sponsorship and everything will be good to go. So if you know anyone who may be interested in sponsoring a charitable non-profit, please let me know. This is also great publicity for them and a tax write off. Or just have them get in touch with me and I can send literature and other information. diabeticaviation@yahoo.com Thanks and God Bless

Forum Post: Re: "Remember Me" campaign

Josh — Mon, 19 Oct 2009 14:05:00 GMT

Bill, have you tried to contact your local chapter of JDRF? I know that when I first signed up under the "Remember Me" campaign it took a while before I was contacted as well. If you don't have any luck with your local chapter let me know and I will dig up some old emails that might have information for someone you can contact.

Forum Post: Re: ADA vs. JDRF

Josh — Thu, 15 Oct 2009 19:25:00 GMT

That is actually a really good question. When I was first reading your post I was thinking "JDRF actually does a really good job of promoting advocacy." However, I am the parent of a child with type 1 diabetes, so I come at it from more of a child's point of view (my wife would definitely not argue with me here). When I read your last sentence though I understood what you are were saying.

From my experience, JDRF has been very open to new ideas that benefit both children and adults. Have you tried to contact either your local chapter or the national office with some ideas?

Forum Post: Re: dont know what to do

Hasan Shah — Mon, 05 Oct 2009 13:32:00 GMT

hi mox,

i can help you figure out how to approach your advocacy efforts. you can email me at sshah@jdrf.org or call me at 202-465-4111 and we can discuss. i work for JDRF Advocacy and Government Relations and have information to get you started. sorry getting back to you after such a delay, i just started using juvenation on a regulart basis.

you can also check out our Promise to Remember Me Campaign for more information on how to discuss JD with Members of Congress.

hasan shah

Forum Post: Re: What makes a good add??

Anonymous — Sun, 19 Jul 2009 03:10:00 GMT

I do know that in order of importance on an add, it goes 1) Heading/Title 2) Subtitle, and least important is the body. Or so I've heard.

Forum Post: Re: Ideas anyone?

Lori Koch — Fri, 10 Jul 2009 15:26:00 GMT

Boy, that is a tough one. I like the idea of 150 years of progress.... Not sure if it's helpful, but attaching a research timeline. Incredible, the progress we've made. Good luck to you--I like the idea of any float with JDRF stamped on it :-) lori

http://www.ddri.org/ResearchTimeline.asp