Advocacy Blog

A Look Back on FY13 and a Look Forward to FY14

2013-05-31T16:55:00Z

Here in Washington, D.C., the temperature may finally be warming up, but our national political climate has been heated for what seems like the entire 2013 fiscal year. Partisanship continues to rule the day on Capitol Hill, and so during the final hours of 2012 we were elated when Congress agreed to JDRF’s top legislative priority, the renewal of the Special Diabetes Program (SDP), fully funded at $150 million for one-year. Thanks to the advocating of JDRF volunteers and staff, the SDP continues to enjoy broad bipartisan support, as illustrated by the program’s renewal being one of the few success stories to come out of a gridlocked 112^th Congress. Coming into the summer months, we now have about seven months left in our calendar year, and so we’re starting to kick SDP renewal into high gear once more, making sure a multi-year, fully-funded renewal is on Congress’ fall agenda.

With a new Congress in town, naturally we have new Members to meet and educate about JDRF, T1D and the SDP. As soon as the 113^th Congress was sworn in, we kicked off their arrival with our New Member Outreach Initiative (NMOI). Now just five months later, we have met with over half of these new Members in their home state/local district offices, and we continue to set up these intro meetings with high success around the country. Coming up in fiscal year 2014 is one of JDRF’s signature events, the 2013 Children’s Congress (CC), held in early July. Each delegate has a unique story and they are all being featured in a blog series between now and July. CC will be followed by the Promise to Remember Me campaign, which will kick off in August and run until the end of the year. We will be hitting the Hill, and visiting state/local district offices, getting our personal touches in by telling our T1D story, and making sure critical T1D research funding is at the forefront of lawmakers’ minds. It remains imperative that the SDP is renewed this year because if cut, JDRF would not be able to make up the $150 million difference in important T1D research funding dollars being driven to NIH, and essentially research would be lost.

To learn more about Advocacy and to get involved, please visit: advocacy.jdrf.org.

If you are on Twitter, Facebook or Instagram, make sure to follow the Children's Congress (#JDRFcc13) and Promise to Remember Me campaigns (#JDRFPromise).

Thanks for Sticking with Us - Happy Volunteer Week

2013-04-26T13:31:00Z

Hello Instagram!

2013-04-11T13:25:00Z

We have asked you to tweet us, follow us, pin us, and read with us! Well I am excited to announce that we would love for you to ’gram us as well!

JDRF Advocacy is excited to announce our newest social media neighborhood, Instagram! The Instagram community might not be new to you—perhaps you’re already there—so it will be that much easier for you to find us. Follow us at @JDRFAdvocacy.

Every social-media platform has its own purpose, and here at JDRF Advocacy, we try to make advocating type 1 diabetes (T1D) research as easy as possible. The goal in our office is to break down as many barriers as we can between you and national policymakers. We want to make it as easy as possible for you to stay educated on T1D research progress and have your voice heard in Washington and beyond. That means that we come to you. There are JDRF advocates all over Facebook, Twitter, Pinterest, blogs, and now Instagram, so Instagram, here we come!

We’ve grabbed our cameras, and we are ready to bring JDRF Advocacy to you through photos.

Did you know that every second, Instagram users perform 575 likes and leave 81 comments? We like you, and we hope you like us, so we want to show you! By being on Instagram, we know we will get to know you better! You work hard each and every day, experience highs and lows; some days are better than others, and at the end of the day, we want to see what you are going through, so we can figure out how to make advocating a cure easier for you.

Sure, you might be thinking, why do they want to see my photos? Maybe you post photos only of cute cats napping or what you ate for dinner, but guys, get this, we want to see that. We want to see you. We want to see what you are doing and how you are living each and every day with T1D! So if you post a photo you want us to see, make sure to include our handle, @JDRFAdvocacy and/or the hashtag, #JDRFAdvocacy.

Albert Einstein said that “Creativity is intelligence having fun,” so later this year, we will have an Instagram contest. That is all I will leak right now, but to stay in the know, make sure you are signed up to be an Advocate and follow us on Instagram so you are the first to know when we launch the contest.

Until then, remember: “Life is like photography; we use the negatives to develop.”

Note: This blog was originally posted in Countdown

We Heart YOU!

2013-02-12T20:41:00Z

Advocates, here we are, February 14, Valentine’s Day!
Happy Valentine’s Day to you and to your #1!

Here on the JDRF Grassroots team, we wanted to make sure you felt the love we exude for you today. We wanted to make sure you knew just how much we appreciate, love, adore, admire and genuinely like you! Yes, YOU!

You inspire us to come to work each and every day! This year’s Annual Report highlighted 42 milestones in JDRF’s 42 years, but really, we have millions; each and every one of you is an inspiration for us! You advocate on the Hill in Washington, D.C. and at home, in your district offices. You call, email and drive hours to make sure you get that meeting and that your legislators know how important type 1 diabetes (T1D) funding is to you and for that, we love ya!

Yesterday, our office held it’s monthly call with your chapter’s Advocacy Team Leader. We thought that moving forward; I’ll share some of what we talk about on these monthly calls so you’re always ‘in-the-know’!

New Member Outreach Initiative (NMOI)
There were over 90 new members elected to Congress last November. NMOI is a campaign to meet these members and introduce JDRF to them. NMOI kicked off last week and we have already completed three of the 90+ meetings, putting us off to a great start! If you know you have a new Congressional Member and would like to get involved, please register here!

Government Day
Advocacy Team Chairs and a few additional advocates will be meeting in Washington, D.C. March 16-19^th to storm the Hill. Leaders will be attending workshops to better equip them with the tools they need to advocate for T1D on the Hill and back at home. After their briefings and various sessions, they will take on the Hill.

Intern with Us!
The Government Relations office in Washington, D.C. is looking for Summer interns! To apply, you must be a student who has completed at least one semester of college! Get real-world office experience as you help us gear up for Children's Congress and the 2014 Promise Campaign. Email Claire at Cnash@jdrf.org for more information.

Spring Walks
Spring Walks have begun and we will be sending Advocacy materials to the Volunteer leaders for each Walk. We also host online trainings for people who might be interested in volunteering with Advocacy at their Walks. To learn more, please email Advocacy@jdrf.org.

So Advocates, that is what we have cooking in the Advocacy Office and we hope you can feel our outpouring of love for you! And as you finish reading this update; be sure to comment below with the name of your loved one who you advocate for!

Talked to you next month-XOXO
Amanda the Advocate

42 Reasons JDRF is Thankful for YOU

2013-01-18T20:16:00Z

JDRF was founded 42 years ago, by parents of children with type 1 diabetes (T1D) in 1970. For the past 42 years, JDRF staff and volunteers have worked together to fund research aimed at finding a cure, better treating and preventing T1D. This year, the JDRF Annual Report 2012 highlights 42 specific milestones in T1D research, awareness and advocacy. We celebrate these 42 milestones that are the result of your hard work! Just as it was back then, JDRF is a volunteer-led organization – and 42 years later, we applaud you, our volunteers and Advocates, for advancing T1D research and awareness to levels never imagined. For that we can only say: Thank You.

In our 42nd year, you arranged over 450 meetings with Members of Congress. You signed and sent the Artificial Pancreas petition to your family, friends, co-workers and neighbors. Thanks to you, over 100,000 people made sure the Food and Drug Administration (FDA) knew how important guidance on the artificial pancreas system is to the T1D community. And in closing out the year, just a few weeks ago, you mobilized with great force and urgency over the renewal of the Special Diabetes Program (SDP) before Congress adjourned for the year. Without your calls and emails and personal interactions and visits, $150 million per year for critical T1D research could have been lost. But you made sure it wasn’t – Thank You.

In the last 42 years, maybe we have been pushy, we sent you too many letters, faxes, telephone calls and now emails and we often ask you to drop what you’re doing and act right now, immediately. And in all those years, we have always counted on our volunteers and our advocates. Why? Because every time, we know you are always willing to help! We know that together, we will find a cure through continued diabetes research. Together and through our constant awareness efforts, we will let the world know of this insidious disease and we will make sure Congress knows JDRF and knows how important it is to fully fund type 1 diabetes research to better the lives of our loved one(s) once and for all.

So this year’s Annual Report is a celebration of 42 of the unique people, programs and signs of progress that compel people to join JDRF Advocacy and tirelessly work to accomplish our goals. JDRF has too many stories to ever tell them all, but rest assured, if we had all the space in the Library of Congress, we could start filling it immediately with the stories and many successes of your hard work and dedicated efforts.

We can never say it enough: so from our family to yours, Thank You for all that you do! We hope you’ll like the JDRF Annual Report 2012.

U.S. Congress Votes to Renew the Special Diabetes Program (SDP)!

2013-01-02T03:44:00Z

Congrats again, JDRFers!

As one of the final acts of the 112th Congress, the U.S. House of Representatives and U.S. Senate approved a broad bipartisan bill that included $150 million for the Special Diabetes Program (SDP), extending the program for an additional year. The measure is expected to be signed by the President shortly.

This accomplishment is due to the tremendous leadership of our champions on Capitol Hill and to the incredible efforts of you – the JDRF volunteer who spends countless hours advocating for this critical research funding. With this extension, our nation can continue to make remarkable scientific progress in managing and treating type 1 diabetes while working towards a cure, and improving lives while reducing health care costs to our nation.

Once the new Congress convenes, we will be back in touch to let you know how you can contact your Members of Congress to share your appreciation. But in the meantime, we want to thank you for your great advocacy efforts and wish you a Happy New Year!

Thanks for your support over the last year… we’ll be back at again this year and will continue to need your support, so here’s to another year of great advocacy efforts by you!

Hasan Shah
JDRF Advocacy

Special Diabetes Program (SDP) Funding Approved by U.S. Senate

2013-01-01T12:32:00Z

Thanks to you and your advocacy efforts on behalf of JDRF!

I am happy to report that early this morning (around 2:15 am to be more exact!), the U.S. Senate passed legislation which includes a one-year renewal of the Special Diabetes Program (SDP) at the current funding level of $150 million annually.

The SDP funds research through the National Institutes of Health which helps accelerate progress to cure, treat, and prevent type 1 diabetes (T1D). Renewing the SDP was JDRF's top legislative priority this year and it was your advocacy on behalf of everyone affected by T1D which brought us this far. Thank you!

The U.S. House is expected to vote on the legislation shortly. We will keep you posted on developments and will let you know when you can contact your Members of Congress to say thank you.

We greatly appreciate all that you do. Thanks again and be sure to let us know what this means to you by leaving a comment below!

Happy New Year,

Hasan Shah
JDRF Advocacy

Email Congress to Renew Critical T1D Funding

2012-11-29T19:13:00Z

Help me tell Congress, “Renew the Special Diabetes Program (SDP)” by sending a quick email (…and thanks again to those of you that made calls earlier this month, use this email alert to follow up)!

As you know, the SDP is a critical federal program that is helping to advance research to cure, treat and prevent type 1 diabetes and its complications. Congress needs to renew the SDP before they adjourn for the year in order to prevent SDP-funded research from slowing down or halting completely.

Please take action now and personally urge your Representative and Senators to support the timely, multi-year renewal of the SDP!

Share this call-to-action with your family and friends and help us spread the word! You can use the text below to share with your networks on Facebook and Twitter:

Facebook: Help me tell Congress, “Renew the Special Diabetes Program (SDP)” by sending a quick email at www.jdrf.org/ACTION! The SDP is a critical federal program that is helping to advance research to cure, treat and prevent type 1 diabetes and its complications—and I need your help to make sure it continues!
Twitter: Tell Congress #RenewSDP at www.jdrf.org/ACTION! Help advance research to cure, treat & prevent #T1D and its complications! #diabetes #DSMA

Hasan Shah
JDRF Advocacy

Giving Thanks - Family, Friends and the SDP

2012-11-21T14:12:00Z

Good morning. As I have spent the last days preparing for the visit of my family for the Thanksgiving holiday, I have been thinking about what I am grateful for. As the National Chair of JDRF Advocacy and the parent of a daughter with type 1 diabetes, I am often reminded of what our JDRF community has accomplished, and also of how much more there is to do.

I have communicated with many of you here on the “Type One Nation” Advocacy blog throughout the fall about why securing a multi-year renewal of the Special Diabetes Program (SDP) before Congress adjourns for the year is imperative. The SDP provides $150 million a year through the federal government for critical T1D research at the National Institutes of Health (NIH).

What am I grateful for? I am grateful for my daughter and for all of my family. I am also grateful for my “other family” – that is, my JDRF family, and the work we do together at JDRF Advocacy. I am thankful for SDP funding to cure, treat and prevent diabetes. I know that the improved therapies we have today are a result of the SDP and that a better, healthier future for my daughter and for all people with diabetes requires that we continue our efforts, and that we Don’t Stop Now – RENEW THE SDP.

Please leave me a comment below, and tell me why YOU are thankful for SDP research. Then, retweet this on Twitter, share this on Facebook, and please let as many of your friends and family as possible see the above image on your social networks.

Enjoy the holiday, the company of loved ones, and then rest up. We’re going to need to put all our energy into advocacy efforts when Congress returns to Washington next week.

Today and every day, thank you for all you do.

Camille Nash
JDRF Advocacy
National Volunteer Chair

Congratulations on the Final AP Guidance

2012-11-16T18:24:00Z

After all of the work many of you put into making the artificial pancreas guidance from FDA a reality, I wanted to say thank you and congratulations! FDA released the final guidance and included nearly all of JDRF’s suggested changes – see the statement we made. This truly is a milestone in artificial pancreas development that will help to get these much needed systems to people with type 1 diabetes.

We have more to do. Artificial pancreas systems are now being tested in outpatient trials, thanks to funding from JDRF and the National Institutes of Health's Special Diabetes Program (SDP). We need your help to ensure Congress passes a multi-year renewal of the Special Diabetes Program before the end of the year so this funding can continue. Contact your members of Congress and tell them to renew the SDP to advance the artificial pancreas!

And thank you for all you do.

World Diabetes Day Action - Call Congress

2012-11-14T20:46:00Z

It’s a critical time for type 1 diabetes (T1D) research, and we need you to call your members of Congress today (or tomorrow, 11/15) and tell them “don’t stop now, renew the SDP!” The Special Diabetes Program (SDP) provides $150 million a year for T1D research through the National Institutes of Health. It is advancing important new technologies and treatments and bringing us closer to a cure – and it will end if Congress doesn’t act to renew it.

Calling is easy, just follow these steps:

GO to the JDRF Advocacy Call site to read the summary for this call-to-action and then enter your email address where you received this message.
Read the talking points and then enter the phone number at which you would like to be called.
Pick up the phone when it rings… it’s the JDRF Advocacy site calling!
After a quick intro, you’ll be connected to the office of the members of Congress listed to the left of the screen automatically.
Press * to get ready for the next call and fill out a short, two question, survey.

Please DO NOT hang-up until you are on the Thank You page.

By taking action, you can help continue progress towards technologies like the artificial pancreas, therapies to prevent kidney disease, and research to better understand the causes of T1D so we can cure and prevent it. Completing all your calls will ensure that all of Congress is hearing from T1D advocates. And providing your feedback through the survey will allow us to determine if we need to do any additional follow up with a congressional office.

You can learn more about the SDP on the new Advocacy site and be sure to share all the great things you learn by ‘liking’ the site!

Hasasn Shah
JDRF Advocacy

T1D and Veteran's Day

2012-11-10T00:32:00Z

November is National Diabetes Month. We also celebrate Veterans’ Day and honor those who have served or are serving in the United States military.

Captain Joseph Budzyn of Mokena, Illinois, an Eagle Scout and a 2008 graduate of the Air Force Academy recently shared his story with me. Nominated to the Air Force Academy in Colorado Springs by his congressman, he joined this prestigious class of 1300 young men and women to fulfill his dream of serving his country and learning to fly. He was commissioned as a 2^nd lieutenant and was a C-130H copiliot at the time of his diagnosis. Currently a captain, Budzyn recently wrote me about his type 1 diagnosis and what striving for a cure for type 1 and better therapies and treatments until that time, means to him.

“ I was diagnosed with T1D two years ago on 23 Sept 2010. At the time, I was in training as a C-130H pilot for the US Air Force. When I started having the symptoms and researched them online, it always came back that I probably had T1D. If I was diagnosed, I knew it would mean the end of my flying career so I delayed the inevitable as long as possible.

Over the last two years I have been able to remain on active duty as an officer in the Air Force. While I have not been able to continue flying for the Air Force, I am in the process of retraining and transitioning to a new career field.

So what motivates me? The possibility of a future where children whose dream it is to fly or serve in the military do not have to give up on that dream because of T1D. I am motivated to help find a cure or further advocate for improvement in medical devices to control and reduce the burden of having T1D. Thank you for your time and I truly look forward to working with JDRF!”

Captain Budzyn’s dream for the future is not different from the hopes and dreams most parents have for their children: to live a rich and productive life and for them to follow their dreams; that they discover a passion that gives their life meaning and makes the world a better place.

As Captain Budzyn and anyone else living with type 1 will attest, being diagnosed profoundly changes your life, creating new challenges, changing the way you live day-to-day, altering the route taken to achieve your goals, sometimes changing the goals themselves.

Living with diabetes requires enormous amounts of energy, tenacity and resilience. Following one’s dreams requires the courage to persevere and navigate obstacles, forging new paths, and at times creating new goals, new dreams.

On Veterans’ Day, we thank Captain Budzyn and all service members for their sacrifices and dedicated service to our country and its’ principals.

In November, National Diabetes Month, we also honor all those who live with diabetes. We are thankful for the scientists, doctors, diabetes advocates and all those who have played a role in this progress that has resulted in better, safer and easier management of type 1. And we continue to advocate for diabetes research funding, knowing life can and should be so much better for people with type 1. From the strength of our numbers as JDRF Advocates to the passion in our hearts, we will strive for better treatments and technology as we continue moving closer to a cure.

To find out what you can do to help support type 1 diabetes research, visit our JDRF Advocacy site or leave me a comment below!

Camille
JDRF Advocacy

The Time to Renew the SDP is NOW!

2012-11-07T20:37:00Z

For the past few months, we’ve been stressing the importance of the Special Diabetes Program (SDP), which has in one way or another changed the lives of every person living with diabetes today. Since Congress and the Administration created the program in 1997, the SDP has led to groundbreaking discoveries and new treatments. However, the diabetes community could face a sudden halt to this progress, without a multi-year renewal of the SDP before Congress adjourns for the year. That would result in a 35% reduction in federal diabetes research funding. Between now and the end of the year, we will be equipping you with key facts about why you must urge Congress to support the SDP – and calling upon you to take action when your Representative and Senators need to hear from you!

So, what can you do? Check out JDRF Advocacy on the social networks you are on. We will be posting SDP information on our Facebook, Twitter and Pinterest pages every day between now and the end of the Congressional session. ‘Like’ the content that touches you and share it with your friends! It doesn’t matter if you have 52 followers or 1,000 friends, share it and help us spread the world. We have a lot of exciting things we cannot wait to unveil. A new website, infographics and a call to action are all in the works!

Gary Hall Jr. ten time Olympic Medalist has already started spreading the word, urging Congress to renew the SDP. Feel free to leave your reasons below. The SDP provides critical funding that will continue to change the lives of people with T1D and with your help, we will continue to learn from SDP funded research! Together, we will get the SDP renewed!

Don't Stop Now, Renew the SDP!

Amanda
T1D Advocate

WSJ Op-Ed by Woody Johnson Discusses Importance of Diabetes Research

2012-10-25T22:35:00Z

In today's Wall Street Journal, you'll find an Op-Ed entitled "The Folly of Defunding Diabetes Research," authored by JDRF International Chairman and owner of the NFL's New York Jets, Robert Wood "Woody" Johnson, IV. If you missed this personal and powerful piece about T1D and renewing the SDP (Special Diabetes Program), you can read it by clicking here. As a well-known public figure, we're lucky that Mr. Johnson shared his personal story to help educate others about T1D, the research resulting from the Special Diabetes Program, and why we must renew it.

Here's a highlight from the piece:

"For the past 16 years, the Special Diabetes Program has been the foundation of the federal government's effort to combat diabetes. As a businessman, I know when I see a program that works, and the $150 million in annual funding provided by SDP has led to significant discoveries into what causes Type 1 diabetes and how to better treat the disease. Researchers can now imagine what has seemed impossible -- a cure."

You too, can help educate others about T1D and the Special Diabetes Program. As an Advocate for JDRF, we'll notify you of important diabetes related issues (like renewing the SDP!) and let you know how you can help. The more Advocates we have speaking up about the importance of research and the Special Diabetes Program, the better!

As Mr. Johnson says, "We have the opportunity to spare untold millions of Americans the trauma of this disease. Congress must make this long-term commitment to combating -- and potentially defeating -- diabetes. Even at a time of national economic difficulty, the choice seems obvious. The Special Diabetes Program works. Congress must ensure it continues."

Join us as we work together to make sure Congress renews the Special Diabetes Program. We can't do it without you! Please let us know in the comments section below why you'll be joining us in this effort.

Don't Stop Now. Renew the SDP.

Tips to Children's Congress

2012-10-22T13:59:00Z

We’re less than 2 weeks out from the last day to apply to the JDRF Children's Congress 2013 - Thursday, November 1 or T1D Day! If you know someone age 4 to 17 with T1D (type 1 diabetes) and has never been a CC Delegate, I hope you’ll encourage him or her to submit an application this week!

This will be my fourth time as part of the team that supports Children's Congress (CC) so I thought I share a few tips about the application that might be handy to potential applicants that have applied in the past or are applying for the first time:

DON'T GIVE UP! The volunteer selection committee looks favorably upon applicants that have applied multiple times… to them, it shows that being a CC delegate isn’t just about getting selected to you, but about representing the T1D community!
Be candid about how T1D impacts your life and how you beat it every day to persevere in everything you do!
Take the time to learn about the Special Diabetes Program – not only does it help all of us be better advocates for T1D research but as an applicant, it’ll make your submission more compelling and relevant to CC.

Remember, if you or someone you know is age 4 to 17 with T1D and has never been a CC Delegate, then be sure to apply to Children's Congress 2013 by November 1, 2012. If selected, JDRF covers the cost of the delegate(s) and one parent/guardian.

Hasan Shah
JDRF Advocacy
CC13 Support Staff