JDRF

JDRF
Founded 1970
Founder Lee Ducat, Carol Lurie
Location
  • Executive Office in New York, NY, with Chapters and Branches throughout the U.S. and 6 international affiliates
Area served
International
Method
Key people
Mission “Accelerating life-changing breakthroughs to cure, prevent and treat T1D and its complications.”[1]
Website jdrf.org

JDRF is a major charitable 501(c)(3) organization dedicated to funding type 1 diabetes research (T1D). JDRF’s stated vision is "a world without type 1 diabetes." [1] The organization has its executive office in New York City,[2] with chapters and branches throughout the U.S.,[3] and international affiliates in Australia, Canada, Denmark, Israel, the Netherlands and the United Kingdom.[4]

JDRF was formerly the Juvenile Diabetes Research Foundation. Its name is no longer an acronym.

History

The organization was founded in the New York area in 1970 as the Juvenile Diabetes Foundation. 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. The Juvenile Diabetes Foundation later changed its name to the Juvenile Diabetes Research Foundation to emphasize the need for research. In 2012, it renamed itself again as JDRF, because type 1 diabetes is as much a disease of adults as juveniles.

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.[5]

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”.[6]

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.[6]

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.[7]

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.[8]

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.[9]

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.[10]

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.[8]

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.[11]

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.[6]

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.[12]

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 and 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. [13]

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[14] to raise money and awareness. [15]

In Australia each May, JDRF run a "Jelly Baby Month" campaign.[16] In May 2013, as part of this campaign, Australian singer Alison Hams wrote and released "Jelly Baby Song".[17]

Advocacy

JDRF organizes people with a T1D connection to act as advocates for T1D research and awareness.[18]

Some of the issues JDRF lobbies on behalf of include:

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."[19]

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

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 [21] and Twitter.[22]

Publications

Publications produced by JDRF on a regular basis include:

See also

References

  1. 1 2 "About JDRF". JDRF. Retrieved 30 March 2014.
  2. ↑ "Contact JDRF". JDRF. Retrieved 30 March 2014.
  3. ↑ "Get Involved". JDRF. Retrieved 30 March 2014.
  4. ↑ "International Affiliates". JDRF. Retrieved 30 March 2014.
  5. ↑ "About JDRF". www.jdrf.org. Retrieved 10 May 2013.
  6. 1 2 3 "Research Funding Facts". www.jdrf.org. Retrieved 10 May 2013.
  7. ↑ "Robotic Pancreas: One Man's Quest to Put Millions of Diabetics on Autopilot". Wired Magazine, April 19, 2010. Retrieved 10 May 2013.
  8. 1 2 "Managed by Machine" (PDF). Nature. 485 (7398). 17 May 2012. doi:10.1038/485S6a. Retrieved 10 May 2013.
  9. ↑ "Artificial Pancreas Gives Girl a Vacation from Diabetes". CNN, March 4, 2012. Retrieved 10 May 2013.
  10. ↑ "Artificial Pancreas Project". JDRF. Retrieved 10 May 2013.
  11. ↑ "Type 1 Diabetes Clinical Trials Connection". JDRF. Retrieved 10 May 2013.
  12. ↑ "JDRF Walk to Cure Diabetes". JDRF. Retrieved 10 May 2013.
  13. ↑ "JDRF Ride to Cure Diabetes". JDRF. Retrieved 10 May 2013.
  14. ↑ http://www.yumasun.com/articles/research-78640-diabetes-matt.html
  15. ↑ "Team JDRF". Retrieved 10 May 2013.
  16. ↑ http://www.jdrf.org.au/help-find-a-cure/jelly-baby-month
  17. ↑ http://www.jdrf.org.au/s/media/jbm2013/jbm_2013_media_release_30_april.pdf
  18. ↑ "Advocacy". JDRF. Retrieved 10 May 2013.
  19. ↑ "Ballot Drive Puts Stem-Cell Funding In Voters' Hands" By Antonio Regaldo and Michael Waldholz, The Wall Street Journal, March 31, 2004, http://on.wsj.com/16508l9.
  20. ↑ "Life with Diabetes". JDRF. Retrieved 10 May 2013.
  21. ↑ "JDRF on Facebook". www.facebook.com. Retrieved 10 May 2013.
  22. ↑ "JDRF on Twitter". www.twitter.com. Retrieved 10 May 2013.

Further reading

External links

This article is issued from Wikipedia - version of the 11/10/2016. The text is available under the Creative Commons Attribution/Share Alike but additional terms may apply for the media files.