Breakthrough T1D

JDRF

File:Juvenile Diabetes Research Foundation (logo).png
Founded	1970
Founder	Lee Ducat, Carol Lurie
Focus	“progressively remove the impact of T1D from people’s lives until we achieve a world without T1D.”
Location	Executive Office in New York, NY, with Chapters and Branches throughout the U.S. and 8 international affiliates
Area served	International
Method	Research funding Political advocacy Education
Key people	Derek Rapp, President and CEO Mary Tyler Moore, International Chairman Robert Wood Johnson IV, Chairman Dick Allen, Chairman of the International Board
Website	jdrf.org

JDRF (formerly known as the Juvenile Diabetes Research Foundation) is a major charitable 501(c)(3) organization dedicated to funding type 1 diabetes research (T1D). JDRF’s stated goal is to “progressively remove the impact of T1D from people’s lives until we achieve a world without T1D.”

JDRF uses over 80% of its expenditures to support research and research-related education.”

The organization has its executive office in New York City, with chapters and branches throughout the U.S., and international affiliates in Australia, Canada, Denmark, Germany, Israel, Mexico, the Netherlands, and the United Kingdom.

History

JDRF was founded in the Philadelphia area. Led by Lee Ducat, a group of local parents of children with T1D mobilized to raise money for diabetes research, and formed the first chapter of what was then known as the Juvenile Diabetes Foundation. A second chapter was founded shortly thereafter in Miami, Florida, followed by chapters in northern New Jersey and Washington, D.C. The fledgling organization was defined by its commitment to research funding. In addition to the high priority on funding T1D research, the organization’s founders resolved to inform the public about all aspects of T1D, advocate for more research funding from the federal government, and maintain the organization’s system of management by volunteer lay people. Since its inception, JDRF has evolved to become a worldwide leader in the fight against T1D. JDRF now has chapters and branches in most U.S. states, and international affiliates in several different countries.

Research

Research portfolio

JDRF is currently sponsoring $530 million in scientific research in 17 countries. In 2012, JDRF provided more than $110 million to T1D research.

JDRF identifies its research goals as being either “near- to mid-term” or “long-term”.

Near- to mid-term goals include delivery of the following to people with T1D:
• An automated low-glucose suspend artificial pancreas system, which predicts and prevents severe blood-glucose lows;
• A treat-to-range artificial pancreas system, which automatically keeps blood glucose levels in a specified range;
• The use of existing type 2 diabetes drugs to improve blood glucose control in people with T1D compared to the use of insulin alone;
• The use of donated human islets as a treatment for low blood glucose unawareness.
Long-term goals include delivery of the following to people with T1D:
• A beta cell encapsulation product providing insulin independence for more than a year without the need for chronic immunosuppression;
• Novel therapies for beta cell survival and immune modulation that when used in combination can extend the period of insulin independence after diagnosis for more than two years;
• Advanced-generation artificial pancreas systems such as those that deliver two hormones and those that have full (24-hour) automation features that further improve glycemic control;
• A glucose responsive insulin that provides glycemic control with a single shot per day, or less often;
• Novel therapies that improve eye disease in people with T1D;
• Therapies that prevent or delay the onset of insulin dependence for at least two years in people with autoantibodies for T1D.

The majority of JDRF-funded research falls into one of the following three categories.

Cure research

JDRF funded $65.1 million (59.1% of its research funding) in cure therapy research, with $23.9 million going to beta cell health and regeneration therapies, $10.4 million going to beta cell encapsulation therapies, $6.8 million going to immune therapies, $17.2 million to cure biomarkers and imaging tools, and $6.8 million to Cure Transportfolio projects.

Treatment research

JDRF funded $35.7 million (32.5% of its research funding) in treatment therapy research, with $12.4 million going to artificial pancreas systems research, $2.5 million to glucose control therapies and $20.4 million to complications prevention and treatment therapies.

Prevention therapies research

JDRF funded $8.2 million (7.5% of its research funding) in prevention therapies research.

JDRF also funded an additional $1 million in general research projects not falling under any of the above categories.

Artificial Pancreas Project

The Artificial Pancreas Project is a multi-year initiative to help accelerate the availability of artificial pancreas technology to people with T1D.

An artificial pancreas would be a wearable device that would integrate two currently available technologies – continuous glucose monitors (CGM’s) and insulin pumps – via a computerized program that would use blood glucose levels obtained through the CGM to calculate an insulin dosage to be dispensed through the insulin pump. It would also contain a mechanism known as a “low-glucose suspend” whereby a CGM detecting low or sinking blood sugars would signal the pump to stop dispensing insulin until the wearer can treat the low blood sugar with food or glucose tabs. The device would help people with T1D keep their blood sugar levels as close to normal as possible, reducing the short-term danger of hypoglycemia and the long-term risk of complications of T1D caused by years of high blood sugar levels.

JDRF is currently funding scientists across the world conducting clinical research on the use of the artificial pancreas and has formed partnerships with industry that will accelerate development of this technology.

The Artificial Pancreas Consortium is a worldwide network of scientists and engineers dedicated to creating technology that would support a “closed-loop” system connecting CGM’s and insulin pumps. This research is currently being conducted at multiple sites, including several universities and institutes across the U.S., and Cambridge University in the United Kingdom.

JDRF is focused on the development, regulatory approval, and acceptance of continuous glucose monitoring and artificial pancreas technology with the goal of making the technology accessible to people with type 1 diabetes in the shortest possible timeframe.

JDRF keeps in constant communication with the Food and Drug Administration (FDA) as it advocates for health care coverage of technologies such as continuous glucose monitors and works to ensure clinical acceptance of technologies such as the artificial pancreas.

In 2012, the FDA approved guidance for further development of artificial pancreas technology, including approval for testing the device in an outpatient setting. JDRF helped influence that approval by providing the FDA with recommendations from its own panel of expert clinicians; almost all of JDRF’s recommendations were adopted in the approved guidance.

Clinical Trials Connection

The JDRF Type 1 Diabetes Clinical Trials Connection is an online customized clinical trials listing service. The “opt-in” portal helps people find information about and register for the latest type 1 diabetes human clinical trials throughout the U.S. The subscription service offers monthly emails with up-to-date information about newly launched trials, and contact information for the researchers conducting the trials of the user’s specified interest.

IDDP program

Launched in 2004, JDRF's Industry Discovery and Development Partnership (IDDP) establishes partnerships with and provides funding to both pharmaceutical and biotechnology companies to accelerate the discovery, development, and commercialization of disease-modifying therapeutics and devices for the treatment and cure of type 1 diabetes and its complications. In accordance with the IDDP partnership stipulations, partnering companies receiving funding must provide their own project funding equal to or greater in value to JDRF’s contribution. Examples of recently announced partnerships include those with Tandem Diabetes Care to develop a dual-chamber infusion insulin pump that will support efforts to develop effective artificial pancreas systems and with ViaCyte for development of drugs to be used in beta cell therapy and encapsulation.

Fundraisers for the organization have called for more transparency, as details are not outlined in the organization's 990 filings, however, financial details on such programs are only available to the JDRF's Board of Directors.

Fundraising and events

JDRF has two national fundraising events in the U.S. that are open to public participation: The Walk to Cure Diabetes and The Ride to Cure Diabetes.

JDRF Walks are held at over 200 locations across the country and are managed by local JDRF chapters. Participants can walk as individuals, or join a team (which can be started by a family, company or any group of people). JDRF’s Walk to Cure Diabetes program has raised over $1 billion since 1992, and has more than 600,000 participants each year.

JDRF Rides are managed by the nationally-based Ride to Cure program, though Chapters help promote the event and organize local Ride teams. Participants of all fitness levels may choose from one of several Ride locations and bike for their choice of distance (usually between 30 to 100+ miles) to raise money for JDRF. Riders commit to a fundraising minimum that is based on their Ride location. Riders, who come to the U.S. from around the world to participate, get expert coaching and training up to months in advance from USA Cycling certified coaches. The 2012 JDRF Ride to Cure Diabetes took place in: Burlington, VT; La Crosse, WI; Lake Tahoe, NV; Death Valley, CA; and Tucson, AZ. Nashville, TN was added in 2013 and Greenville, SC in 2014.

In addition to Walks and Rides, JDRF chapters also run local galas, golf tournaments, and other fundraising initiatives.

Additionally, Team JDRF is a nationally-based JDRF program that empowers individuals to raise money for JDRF through personal campaigns and third-party events. For example, in 2012 Matt LeBaron and Amber Corkin biked across America to raise money and awareness.

In Australia each May, JDRF run a "Jelly Baby Month" campaign. In May 2013, as part of this campaign, Australian singer Alison Hams wrote and released "Jelly Baby Song".

Advocacy

JDRF organizes people with a T1D connection to act as advocates for T1D research and awareness.

Some of the issues JDRF lobbies on behalf of include:

• Congressional support for and renewal of the Special Diabetes Program, which provides federal funding for type 1 diabetes research. The Special Diabetes Program accounts for 35% of publicly funded T1D research in the U.S. Renewal of the Special Diabetes Program is JDRF’s major legislative priority. JDRF manages a major advocacy campaign in support of SDP renewal. In January 2013, Congress renewed the program for $150 million in funding to extend through September 2014.
• Expedited regulatory approval by the FDA for devices and drugs that can have immediate impact on the lives of people with type 1 diabetes by better treating or curing the disease
• The expansion of federal funding of and support for specific types of research that may have an impact on type 1 diabetes, such as stem cell research.

JDRF has two advocacy campaigns running currently – Children’s Congress and the “Promise to Remember Me” campaign. The campaigns hold events on alternating years.

Children’s Congress (conducted on odd-numbered years) sends children with T1D from across the 50 states to Washington, D.C., to speak in front of Congress about the importance of federal funding for T1D research. So far, advocates for these events have been limited to children (and their parents), rather than adults living with the disease. However, as JDRF's CEO Jeffrey Brewer has correctly observed in numerous statements, including the announcement of a new outreach Kit to Support Adults Newly Diagnosed with Type 1 Diabetes called the "T1D Care Kit", adults actually make up 85% of all people with type 1 diabetes, not children. Still, children have proven to be compelling lobbyists in the past. In an article of The Wall Street Journal, the authors observed that the JDRF "... has become adept at unleashing an army of hard-to-resist lobbyists -- made up of determined parents and their afflicted children -- on researchers, politicians and potential donors."

The Promise Campaign (conducted on even-numbered years) organizes meetings between JDRF Advocates and their Senators and Representatives. Advocates use these meetings to educate legislators about T1D and emphasize the need for federal research funding.

Support and resources

Outreach resources

• JDRF offers patients with type 1 diabetes and their families various outreach resources in the form of interactive online toolkits, as well as mail-order informational packets and kits.
• Online Diabetes Support Team– An online resource in which JDRF volunteers are available via the JDRF website to talk one-on-one about T1D. People with questions or looking for support fill out an online questionnaire and are contacted by a volunteer within 48 hours. Volunteers answer general inquiries about T1D resources but cannot dispense medical advice.
• Bag of Hope - A backpack filled with educational information about type 1 diabetes for newly diagnosed children and their caregivers. The kit includes a teddy bear called Rufus – the bear with Diabetes. The kit also comes with various multimedia materials and tools including: Rufus Comes Home book, A First Book for Understanding Diabetes, other reference books, a DVD, and an Accu-Check Aviva Compact Blood Meter. Families can request a meeting with a JDRF volunteer in their area in order to receive the Bag of Hope and connect with other families of newly diagnosed children with type 1.
• Adult Type 1 Pak: Similar in concept to the Bag of Hope but designed for newly diagnosed people ages 16 and over. The Pak is a sling-style bag containing educational materials and resources targeted at adults, including the Adult Type 1 Toolkit (described below), Mary Tyler Moore’s memoir “Growing Up Again” about her own diagnosis with T1D in adulthood, and a Bayer Contour Next USB Blood Glucose Monitoring System.
• Adult Type 1 Toolkit – a manual (including an interactive online component) that includes discussion forums and personalized information for the various stages of adult life with type 1 diabetes. Sample topics in the toolkit include: day-to-day management; social and lifestyle issues; relationships; diet and exercise.
• Adult Type 1 Toolkit - Newly Diagnosed - a special version of the Adult Type 1 Toolkit for those diagnosed during adulthood.
• Pregnancy Toolkit – a manual with information for people with T1D who are expecting a baby or hoping for a healthy pregnancy. The manual covers the importance of tight glucose control during pregnancy, tips for establishing good relationships with health care providers, and advice on dealing with the emotional issues associated with pregnancy and T1D management.
• Health Care Providers Toolkit – a manual for physicians, nurses, and other health care providers with information about T1D and JDRF research, health insurance, current technologies for diabetes treatment, and links to JDRF and external resources.
• School Advisory Toolkit – a manual to be used by parents, school administrators and students with T1D. Contains practical information on everyday medical needs (such as symptoms of high and low blood sugar), real-life scenarios to help parents obtain a better understanding of schools' legitimate concerns and needs when a student has type 1 diabetes, and tear-out sheets and sample tools for the classroom.
• Mentor program – a program that trains local volunteers to provide guidance and support to families with a new diagnosis of T1D and engage newly diagnosed families with JDRF.

Social networking

JDRF maintains TypeOneNation.org, its own online community for people touched by type 1 diabetes. TypeOneNation.org launched on World Diabetes Day (November 14), 2008, under its original name, Juvenation, and transitioned to the TypeOneNation.org re-brand on World Diabetes Day 2012. The re-brand reflects that type 1 diabetes is a disease of adults as well as children. It currently has more than 20,000 active members. Site features include message boards, blogs, a video library, and educational resources about life with type 1 diabetes. TypeOneNation.org is funded by an unrestricted educational grant from Novo Nordisk through its Changing Diabetes leadership initiative.

JDRF also maintains an active presence on Facebook and Twitter.

Publications

Publications produced by JDRF on a regular basis include:

• JDRF Annual Report – An annual summary of foundation activities. Includes a message from JDRF leadership, financial data, summary of the research portfolio, and personal stories of people with T1D.
• Countdown – An online magazine for the JDRF audience, with stories about JDRF research organizational news and human interest stories about living with T1D.
• Top Research Highlights – A quarterly publication summarizing recent JDRF-funded research advances.
• Cool Research News – A publication about different topics relevant to JDRF research, aimed at teens and young adults.

See also

• Juvenation

Further reading

• Abram Brown (November 8, 2012). "Forbes Picks 5 All-Star Charities: Top Rankings For Efficient Groups". forbes.com. Retrieved March 28, 2014.

External links

• Official website
• JDRF advocacy website
• TypeOneNation: official website
• JDRF Type 1 Diabetes Clinical Trials Connection
• JDRF Children’s Congress website
• JDRF Promise to Remember Me campaign website
• The Chicago Diabetes Project: Global Collaboration for a Faster Cure