Breakthrough T1D
 | This article contains content that is written like an advertisement. (November 2011) |
| Founded | 1970 |
|---|---|
| Founder | Lee Ducat, Carol Lurie |
| Focus | "To find a cure for diabetes and its complications through the support of research."[1] |
| Location |
|
Area served | International |
| Method | Research funding Political advocacy Education. |
Key people | Jeffrey Brewer, 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 mission is “to improve the lives of all people affected by T1D by accelerating progress on the most promising opportunities for curing, better treating, and preventing T1D.”[2]
JDRF has directed a total of $1.6 billion to research since 1970, $116 million of it in FY2011. JDRF uses over 80% of its expenditures to support research and research-related education.Cite error: The <ref> tag has too many names (see the help page).
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.Cite error: The <ref> tag has too many names (see the help page).
History and Founding
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. [3]
Research
Research Portfolio:
JDRF categorizes its research in three main areas:
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Cure, which includes:
• Beta Cell Therapies (replacing or regenerating the beta cells that produce insulin)
• Immune Therapies (reversing and preventing the immune system attack that causes type 1 diabetes)
Treat, which includes:
• Glucose Control Therapies (improving people’s lives by enabling them to maintain better control of their blood sugar by development of either new devices or therapies, including the development of an artificial pancreas to close the loop between continuous glucose sensing technologies and insulin pump technologies)
• Complications Therapies (stopping or reversing the progression of complications in people with diabetes, such as eye, nerve or kidney disease—and treating these conditions in the people who already have them)
Prevent, which includes:
• Research into the environmental and genetic causes of the disease. JDRF has both pre-autoimmunity and post-autoimmunity strategies aimed at minimizing and/or eliminating common triggers of the disease.[4]
Funding statistics reported by JDRF in 2011[5]
• Cure and Prevent: JDRF funded $57.2 million (62% of its research funding) in cure therapy research, with $27.2 million going to beta cell therapies and $30.1 million going to immune therapies.
• Treat: JDRF funded $34.8 million (38% of its research funding) in treatment therapy research, with $20.2 million going to complications therapies and $14.6 million going to glucose control therapies.
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. [6]
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. [7]
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. Cite error: The <ref> tag has too many names (see the help page).
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. [8]
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 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. [9]
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.[10]
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 Dexcom, Inc. for development of innovative artificial pancreas technology, with iCo Therapeutics and KalVista Pharmaceuticals for treatment of diabetic eye disease, and with ViaCyte for development of drugs to be used in beta cell therapy and encapsulation. Cite error: The <ref> tag has too many names (see the help page).
Fundraising/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 program raised $86 million in 2011 and had close to 900,000 participants.[11]
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 will take place in: Burlington, VT; La Crosse, WI; Lake Tahoe, NV; Death Valley, CA; and Tucson, AZ.[12]
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.[13]
Advocacy
JDRF organizes people with a T1D connection to act as advocates for T1D research and awareness. [14]
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
• 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.
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. [15]
• 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 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.
• 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 Juvenation, its own online community for people touched by type 1 diabetes. Juvenation launched on World Diabetes Day (November 14th), 2008. It currently has more than 18,000 active members. Site features include message boards, blogs, a video library, and educational resources about life with type 1 diabetes. Juvenation is funded by an unrestricted educational grant from Novo Nordisk through its Changing Diabetes leadership initiative.[16]
JDRF also maintains an active presence on Facebook and Twitter.
Publications
Publications produced by JDRF on a regular basis include:[17]
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.
Life with Diabetes – A sub-section of Countdown with similar tone and feel, but devoted to 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.
References
- ^ "JDRF". Retrieved 2009-02-23.
- ^ "About JDRF". www.jdrf.org. Retrieved 02 May 2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "About JDRF". www.jdrf.org. Retrieved 02 May 2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ Insel, Richard. "Preventing Type 1 Diabetes: The Leadership Role of JDRF". Countdown, JDRF's online magazine. Retrieved 06/04/2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "Facts About JDRF". www.jdrf.org. Retrieved 02 May 2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "Robotic Pancreas: One Man's Quest to Put Millions of Diabetics on Autopilot". Wired Magazine, April 19, 2010. Retrieved 24 May 2012.
- ^ "Managed by Machine" (PDF). Nature. 17. Retrieved 25 May 2012.
{{cite journal}}: Check date values in:|date=and|year=/|date=mismatch (help); Unknown parameter|month=ignored (help) - ^ "Artificial Pancreas Project". JDRF. Retrieved 5/25/2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "Managed by Machine" (PDF). Nature. 17. Retrieved 25 May 2012.
{{cite journal}}: Check date values in:|date=and|year=/|date=mismatch (help); Unknown parameter|month=ignored (help) - ^ "Type 1 Diabetes Clinical Trials Connection". JDRF. Retrieved 5/25/2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "JDRF Walk to Cure Diabetes". JDRF. Retrieved 5/25/2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "JDRF Ride to Cure Diabetes". JDRF. Retrieved 5/25/2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "Team JDRF". Retrieved 5/25/2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "Advocacy". JDRF. Retrieved 5/25/2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "Life with Diabetes". JDRF. Retrieved 5/25/2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "Juvenation". JDRF. Retrieved 5/25/2012.
{{cite web}}: Check date values in:|accessdate=(help) - ^ "Publications". JDRF. Retrieved 5/25/2012.
{{cite web}}: Check date values in:|accessdate=(help)