Tag Archives: JDRF

The Special Diabetes Program is Renewed for One Year

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Good news! The House and Senate approved a 1-year renewal of the Special Diabetes Program at the current level of 300 million dollars: 150 million dollars goes towards Type 1 diabetes medical research through the National Institutes of Health (NIH), and 150 million dollars goes towards Type 2 diabetes prevention and treatment programs for American Indian and Alaska Native populations. The Special Diabetes Program (SDP) was set to expire in September, 2014.

The SDP fully funded the study, PERL: Trial of Allopurinol To Preserve Kidney Function in People with Type 1 Diabetes. This study would not have happened otherwise, with no profit motivation to study an inexpensive drug like allopurinol, as explained at the SDP Progress Report presentation during JDRF government days.

Other SDP breakthroughs include identifying 50 genes associated with Type 1 diabetes (versus 3 known genes associated with Type 1 in 1998), identifying immune therapies that have halted Type 1 diabetes disease progression for over 1 year, artificial pancreas trials now taking place on an outpatient trial basis, and the finding that diabetic retinopathy can be reversed!

Another SDP funded study, the DCCT/EDIC is a 30-year study with 95% of the research subjects still participating. The study has shown that 6.5 years of blood sugar control can decrease kidney disease by 50%. This decrease in kidney disease translates into a projected savings of over 14 billion dollars in 10 years to Medicare from the reduction of end-stage renal disease (ESRD) and a savings of over 126 billion dollars to Medicare in 25 years.

You can read more about the Special Diabetes Program in my previous post: JDRF Government Days.

Note the sequestration caused the Special Diabetes Program to be cut by 5.1%, which resulted in an almost 20 million loss to the program over 2013 and 2014.

This important renewal allows SDP-funded medical research to continue, and ideally a 5-year renewal will be obtained in the future, so that numerous clinical trials will have the chance to deliver on results that will lead to better treatments for Type 1, prevention of Type 1, and ultimately a cure for Type 1 diabetes.

Now you can quickly and easily email your thanks to your senators here and your congress members here.

 

JDRF Government Days

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On March 11th, 2014, 190 JDRF advocates from across the country traveled to Capitol Hill in Washington, DC to meet with their legislators to request a 5-year renewal of the Special Diabetes Program (SDP).

The SDP funds medical research to find better treatments and ultimately a cure for Type 1 diabetes. The SDP is set to expire in September 2013, and if it is not renewed 150 million dollars per year towards research to end Type 1 will be lost.

The JDRF Government Days included an inspiring speech by Jeffrey Brewer, President and CEO of JDRF, called “JDRF: Turning Type One into Type None” in which he detailed plans for a pathway to the cure, including discovery research, clinical development, regulatory, reimbursement, and delivery to patients, collectively known as the pipeline.

JDRF has over $530 million currently invested in Type 1 research projects around the world (in 17 countries, and this includes more than 50 human clinical trials). The research focuses on six key areas: the artificial pancreas, treating and reducing complications, beta cell encapsulation, prevention, restoration of beta cell function, and smart insulin.

Richard Insel, MD, JDRF’s Chief Scientific Officer, Judith Fradkin, MD, Director, Division of Diabetes at the National Institutes of Health, and David Wheadon, MD, JDRF’s Executive Vice President of Research and Advocacy also spoke on the progress of the Special Diabetes Program’s research, citing a new treatment to restore vision loss from diabetic macular edema via VEGF inhibition.

While JDRF contributed 106 million dollars to research in 2013 (over 1.8 billion dollars since its founding in 1970), if the SDP is not renewed, JDRF cannot make up the gap. Studies like the TEDDY study (100% SDP supported), TrialNet (67% SDP supported), the Clinical Islet Transplantation Consortium (98% SDP supported), the Beta Cell Biology Consortium (75% SDP supported), the Diabetes Research in Children Network (67% SDP supported), the Diabetic Complications Consortium (59% SDP supported), and the Diabetic Retinopathy Clinical Research Network (26% SDP supported) will lose their funding.

To support JDRF’s efforts to get the SPD renewed, click here to learn more and sign up to be an advocate.

To act now to email your members of congress to urge them to support a renewal of the SPD, click here.

To learn more about the Special Diabetes Program, click here.

To read about the SDP supported research studies and the burden of diabetes on society, read this JDRF brochure for more information.

Now that’s juicy!

 

 

 

The Diabetes Disconnect

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Recently I saw a friend whom I hadn’t seen for a long time. When I pulled out my daughters’ meters and lancets to check blood sugars, she said “I didn’t think you still had to do that.”

This is not the first time I’ve heard someone say this. People seem to interpret the advent of continuous glucose monitoring systems (CGMS) as the end of fingersticks. Not only were we on a break from the CGMS, but the CGMSs can lead to more fingersticks due to the alarms for low or high numbers and the need to confirm the readings, as well as the need for calibration with fingersticks.

I think there is a big disconnect as to what people think it’s like to have Type 1 diabetes and what it actually is like. Some of that confusion is due to the muddling of throwing Type 2 diabetes into the same pot, like when I get asked if my children are overweight. And some is probably due to confusing headlines, as in Cure for Type 1 Discovered (…it’s in mice) or New Drug for Diabetes (…it’s for Type 2).

Also people are not aware of all the variables that come into play to control blood sugars. I think people think you take your medicine and you get a steady blood glucose of 120, when in fact you have to guess what the dose of your medicine is based on your guess of what the carbs in the food is based on what your guess of the portion of food eaten is, plus take into account your guess of the amount of fat and protein in the food, and whether you just exercised or if you’re about to exercise, or whether you’re going to sleep, or if you’re going to be somewhere difficult to treat a low (such as a child on a school bus); and don’t forget to pray that your pump infusion set is working and that your insulin didn’t fry in the heat. Now push go on your pump or stab your arm with a needle and, voilà, you’re done!

There is one place where there is no disconnect in the world of diabetes and that is at the Children With Diabetes Friends For Life conference in Orlando, which begins on Wednesday July 10th. There everyone gets it, and no one thinks you’re texting while someone is talking to you when you are actually giving your daughter life-saving medicine. And when people see you look up in a distracted manner instead of replying to their questions, they know you are just doing math in your head, plus the complex analysis of variables and prayer as listed above, and will just wait patiently. At Friends For Life, no one will think your daughter can’t go on a playdate because she has diabetes. Here the friends are real, and the conference is one big playdate that makes up for all the playdates and sleepovers that your daughter isn’t included in. There my daughters will wear their pumps and put on the CGMSs and wear them proudly and no one will point and say ‘what’s that?’.

And as if this week isn’t exciting enough, Monday July 8th to Wednesday July 10th is the JDRF Children’s Congress. 160 children from all over country will travel to Washington, DC, to meet with their representatives and explain what it really is like to have Type 1 diabetes. These young diabetes advocates will have one goal: to get the Special Diabetes Program renewed this year by congress so Type 1 medical research can continue. The Special Diabetes Program provides for 110 million dollars in funding and you can learn about it here or become an advocate yourself here. Have a great week!

 

 

 

 

 

 

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Taking the Steps to a Cure for Type 1: The Special Diabetes Program

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The Capitol

The Special Diabetes Program (SDP) legislates 150 million dollars for Type 1 Diabetes research annually. The SPD was renewed in 2012 for one year (previously renewed for 3 years), so it will be up for renewal again this year. Multi-year funding is needed to plan for and continue large-scale trials.

Research studies that the SDP has supported include: Type 1 Diabetes TrialNet, the TEDDY Study, Clinical Islet Transplantation Consortium, the Beta Cell Biology Consortium, the Diabetes Research in Children Network, the Diabetic Complications Consortium, and the Diabetic Retinopathy Clinical Research Network.

To support the renewal of the SDP, you can become a JDRF advocate.

Becoming a JDRF advocate is simple and costs nothing. You can sign up online at JDRF Advocacy. Then you will receive emails with legislative updates and requests to email or call your representatives when needed.

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JDRF Children’s Congress Application Deadline is Nov. 1st

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The next JDRF Children’s Congress will be held in Washington, D.C. on July 8th to July 10th, 2013. Children ages 4 to 17 are eligible to apply. It is a chance for children to advocate for a cure for Type 1 diabetes themselves. They will meet their members of congress and other children with diabetes from around the country, as well as some international delegates. The application is online and can be completed here. The JDRF provides for travel expenses. More information about the program is here. A link to my previous post on the 2011 JDRF Children’s Congress is here: Highlights From the JDRF Children’s Congress.
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Highlights from the Juvenile Diabetes Research Foundation Children’s Congress

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The JDRF Children’s Congress meets every other year in Washington, D.C. and took place this year June 20-22, 2011. The Juvenile Diabetes Research Foundation delegates included 150 children, ages 4 to 17, from every state, and several international delegates, who traveled to Washington to advocate for a cure for Type 1 diabetes. In addition to meeting with their senators and congressmen and women to advocate for the development of an artificial pancreas and for more funding for diabetes research, the children met with professionals with Type I who were there to inspire the kids but who got inspired by the children as well. In their home states, these children share with others what it’s like to have Type 1 diabetes, raise money to find a cure by participating in JDRF walks and in some cases by their own charitable businesses, meet with their congressional leaders locally to advocate for more support, and in many cases participate in research themselves.

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Jeffrey Bower, President and CEO of JDRF, whose son has Type 1, is leading the way to find a cure for Type 1 diabetes and to the development an artificial pancreas along the way.

Supreme Court Justice Sonia Sotomayor told the children what it was like when she was diagnosed with Type 1 diabetes as a little girl. When it was time to have her blood drawn, she ran out of the hospital and hid under a car. Every child in the room could relate to the feeling of wanting to run away from diabetes. The parents gasped when she said she had to check her blood sugar with a razor when she was little. Before school, she said she pulled up a step stool to reach the stove so she could boil her syringe and needle to sterilize it before giving herself her shot of insulin. You can read more of what she had to say here at USA Today or at the Huffington Post: Justice Sotomayor: Childhood Diabetes ‘Taught Me Discipline’.

Gary Hall, Jr. had won 4 Olympic medals in swimming when he got Type 1 diabetes and was told he would never compete again. He said that year he participated in the first JDRF Children’s Congress and was inspired by the children he met there. With a team of medical professionals, he strategized on how to avoid low blood sugars during 8 hours of aerobic exercise per day. He said he checked his blood sugar every 45 minutes during training. After his diagnosis, he went on to win 6 more Olympic medals including his 4 gold medals.

Nat Strand, MD, won the Amazing Race in 2010. She gave up a hair brush so she could fit all her diabetes supplies that she would need in one allotted backpack for her journey around the world. She said she practices what she calls continuous improvement by applying what she learns each day in her diabetes management to the next.

Carling Coffing, an LPGA professional golfer and winner of the Golf Channel’s reality show contest Big Break Sandals Resorts, said her diabetes was a family affair when she grew up. Whoever guessed her blood sugars the closest during the day got to pick what they would watch on TV that night.

Kendall Simmons, NFL football player and super bowl champion, attributed his success in managing his diabetes to the buddy system. He said having a friend on his team who reminded him to test his blood sugar when he might be low helped him on the field.

Brian Kenny, anchor of ESPN’s SportsCenter, whose daughter has Type 1 diabetes, hosted the Town Hall of these athletic elite role models and quipped, “Can you imagine counting all the carbs Kendall Simmons must consume?”

Aaron Kowalksi, Ph.D., marathon runner and leader of JDRF’s Artificial Pancreas Project to develop a closed-loop automated insulin-delivery system, is looking forward to the day when he and his brother and all others with diabetes will have a cure and be able to just “walk away” from diabetes.

Kevin Kline, Oscar-award winning actor, explained the sleep deprivation from checking blood sugars during the night that parents with children with diabetes experience and the added worry parents have, such as when their children leave for college, with all knowing accuracy due to his having a son with Type 1 diabetes. He testified at the senate hearing led by Senators Susan Collins and Joe Lieberman on the importance of expediting the artificial pancreas due to the need for it now. Others who testified included Dr. Griffin Rodgers from the National Institutes of Health, Dr. Charles Zimliki from the Food and Drug Administration and several JDRF children’s congress delegates who spoke eloquently and persuasively on the need for a cure. It was the JRDF in action.

Crystal Bowersox

The children sang the song “Promise To Remember Me” with American Idol finalist Crystal Bowersox who later called the children “150 of the bravest kids I’ve ever met”.

While the 2011 JDRF Children’s Congress is now over, these children and all other children and adults with Type 1 diabetes are still checking their blood sugars with pinpricks, counting carbohydrates, taking insulin, feeling shaky, dizzy and tearful from low blood sugars, or feeling sick with headaches, stomachaches, and thirst from high blood sugars, and taking shots or having needle infusion set changes for insulin pumps, getting their blood drawn for lab tests, working hard to stay healthy and avoid the complications of diabetes while fighting the exhaustion from a disease that never takes a break, and hoping for a cure every day and night.

How you can help:

The JDRF Promise To Remember Me Campaign continues with meetings in hometowns with local representatives. To learn more or to participate, click here.

To learn more about JDRF advocacy, click here and to become a JDRF advocate, sign up here.

To support your local JDRF and participate in the Walk to A Cure, find your local walk here. To support the JDRF Ride To Cure Diabetes, click here.

To learn more about the JDRF Children’s Congress, see the JDRF advocacy blog on the Juvenation website which includes videos from the event.