FAIR NEWSLETTER 

THE LANCET Profiles FAIR

THE LANCET magazine, Europe's eminent counterpart to the "Journal of the American Medical Association" recently published a profile on The FAIR Foundation and its Founder, Richard Darling, DDS. Ironically, this excellent article aligns FAIR's efforts with the Director of the NIH, Elias Zirhouni, MD, and Helene Gayle, President-elect of the International AIDS Society.  THE LANCET Publication is distributed to physicians globally and you may view it here.

House Passes Amendments that Limit the Number of Federal Employees Attending International AIDS Conferences

"My constituents often ask me why Congress continues to spend so much, despite the fact that we have a deficit and an ever-growing national debt," Rep. Scott Garrett (R-N.J.) said. To help correct that problem, Garrett sponsored two Amendments: HR5006 and HR4818. Garrett said he hoped the measures would help avoid situations such as one that occurred at the XIV International AIDS Conference when more than 200 HHS employees attended the conference in Barcelona, Spain, at a cost of $3.6 million. Journalist Joyce Howard Price, who has previously profiled The FAIR Foundation in the Washington Times, reported the story and you may view it here.

National Association of Hepatitis Task Forces

A group of eminent citizens, patients and health leaders have voluntarily formed the "National Association of Hepatitis Task Forces" (NAHTF) to provide support and networking for developing and existing community hepatitis task forces. The NAHTF will reinforce local efforts for better access to care for those affected by hepatitis viruses. The FAIR Foundation recommends all hepatitis task forces join NAHTF and you may visit their website here and hepatitis B & C funding graphs may be viewed here.

Become a FAIR Advocate with a Click:

With a simple click here, then a copy and paste, you can easily convey your displeasure with present NIH spending on your disease and send a prepared letter to President Bush and your Congresspersons. Don't hesitate; do it today!

Your Donation Counts!

Remember that every dollar counts in the fight for FAIR and equitable allocations of NIH research monies. All of the progress we have made in educating America on the unfairness of present research policy has been made possible by the generous support of FAIR Foundation donors. Please click here and help us change our government's policies to insure proper research allocations for your disease of interest. Your donation will be greatly appreciated by all.

Focus Disease:  Parkinson's Disease (PD)

•  Parkinson's Disease is a brain disorder.  It occurs when certain nerve cells (neurons) in the brain die or become impaired. Normally, these cells produce a vital chemical known as dopamine. Dopamine allows smooth, coordinated function of  muscles and movement.  When approximately 80% of the dopamine-producing cells are damaged, the symptoms of PD appear. PD is not contagious. The AMA has concluded that genetics play a role in the development of PD.

•  Parkinson's Disease is common: There are more than 1.5 million Americans who live with Parkinson’s disease, with 60,000 new cases diagnosed each year. Compare to AIDS: AIDS sufferers total approximately 950,000 with estimates of 30-40,000 new infections per year.

•  Parkinson's Disease causes great suffering: Symptoms generally include tremor, muscle stiffness or rigidity, slowness of movement (called ‘bradykinesia’), and loss of balance. While medication masks some symptoms for a limited period, generally four to eight years, dose-limiting side-effects do occur after time. Eventually the medications lose their effectiveness, leaving the victim unable to move, speak or swallow.

• Caregivers.... are Angels to the ill. They make it possible to live with dignity. The FAIR Foundation profiles Jo Rosen of Palm Desert, CA, who has not only been a caregiver to her husband with PD, but she has also spent the last 15 years as President of the Parkinson's Resource Organization (PRO). On a full-time volunteer basis, Jo has tirelessly led PRO in achieving its exemplary Mission Statement of "Helping Families affected by Parkinson's Disease."

• Parkinson's Disease treatment: Leading scientists describe Parkinson's as the “most curable” brain disorder. They hope for truly effective therapy and/or cure within this decade.

• Parkinson's Disease is costly: In 1997, researchers estimated that the annual economic burden associated with Parkinson’s disease (PD) in the United States was $25 billion.

• Parkinson's Disease & Stem Cell Research? Stem cell research can provide breakthrough treatments and cures for diseases and injuries that affect millions of Americans with Parkinson’s Disease, diabetes, cancer, heart disease, cystic fibrosis, multiple sclerosis, sickle cell disease, HIV/AIDS, osteoporosis, ALS, autism, severe burns and spinal cord injury.

• Fairness? The NIH is spending $14,326 research dollars on each patient death from PD in 2005 versus $179,000 on each patient death from AIDS. The NIH is spending $162 per PD patient in research versus $3,084 per AIDS patient. Jeffrey C. Martin, Chairman of the Board, Parkinson’s Action Network, stated, “While the NIH has a new emphasis on translational research under Director Zerhouni, the resources necessary to truly yield the payoff we are seeking have not yet been committed.”

• Parkinson's Disease & The FAIR Foundation: In every presentation given by The FAIR Foundation, Parkinson's Disease is highlighted in the powerful ABC/ADA John Stossel Video. It features one of our heroes in the battle for more research funding: Joan Samuelson, J.D., who has persevered against PD to be President of the Parkinson’s Action Network. Please take a few moments to view the video HERE (used with authorization--high speed connection required).

• Parkinson's Disease and all other diseases except HIV/AIDS would receive larger research allocations under the FAIR Foundation's recommended policies.

The FAIR Foundation is growing fast, but we need more members to change Congress and the NIH. Please help us by posting this in chat rooms, internet support groups, and by forwarding it to your associates, friends and relatives with your recommendation that they join free HERE. With strength in numbers, we WILL achieve fair and equitable NIH distributions for Parkinson's Disease as well as ALL other diseases. Member sign-up information is confidential.

Facts on Parkinson's Disease from Parkinson's Action Network,  National Parkinson Foundation, Parkinson's Disease Foundation, American Parkinson Disease Foundation and from the California Stem Cell and Research Cures Initiative Organization

The FAIR Foundation
78629 Bougainvillea Drive, Palm Desert, CA 92211  
E-mail: FAIR@dc.rr.com

FAIR Mission Statement: The FAIR Foundation is dedicated to fair and equitable distribution of research funds by the NIH for all diseases, including the 16 that kill a million more Americans than AIDS. A disease’s mortality rate shall be given emphasis in determining allocations and other secondary factors shall be utilized to insure diseases that cause great suffering but have low mortality rates will also receive significantly increased funding.

FAIR is an acronym for Fair Allocations In Research. FAIR is fair.