FAIR Physicians and Founder request audience with Warren Buffet Warren Buffet has made a most generous stock pledge of approximately $37 billion dollars to the Bill and Melinda Gates Foundation to improve global health and education as reported by Carol Loomis of Fortune. A significant portion of this will be spent on combating HIV/AIDS. FAIR Board of Director's physicians Morse, Rossaro, Berry, Hillebrand and our Founder's request for an audience with Mr. Buffett to share our concerns was denied. Our subsequent letter requested consideration of greater diversification in his philanthropy so as to benefit other organizations and their researchers. You may read those correspondences by clicking here. Gates has given $6.5 billion, gives $787 Million more to fight AIDS, TB, Malaria As reported recently, the $29 billion Bill & Melinda Gates Foundation recently announced  grants totaling $287 million for HIV vaccine development. In addition, the Gates Foundation said it was giving $500 million to the Global Fund to Fight AIDS, TB and Malaria. The Bill & Melinda Gates Foundation has previously given 6.5 billion dollars to HIV/AIDS efforts. NIH Director rejects FAIR's Request for more fair and equitable research allocations In June we wrote the Director of the National Institutes of Health, which oversees USA bio-medical research, and made a thorough presentation calling for more fair and equitable research distributions. Our original letter that called on a partial re-distribution of AIDS funding to other illnesses and Dr. Zerhouni's response to FAIR may be viewed here. UPDATE: California AIDS Surveillance Report The most recent California AIDS Surveillance Report clearly illustrates the dramatic success against HIV/AIDS in CA that is being seen throughout America. Contrary to media reports of a crisis in females, only eight  percent of the cases are in women while only two percent of males acquired AIDS from heterosexual contact. For the full CA Surveillance report, including the low HIV/AIDS 2006 death toll in newly infected patients of fifty through August 31, click the Office of AIDS logo.    "A more balanced distribution of tax-generated $$ that will favorably impact bio-medical research for Diabetes" FAIR submitted an Abstract in favor of increased funding for Diabetes Mellitus bio-medical research to the Sixth Annual Diabetes Technology Society's Meeting in Atlanta. GA. Co-written by our Founder and Doctors Morse, Concepcion and Hillebrand from our Board of Directors, you may view it here.   President Clinton: "People living with HIV and AIDS can live a normal life ... ...if they go for testing to know their status." In this Reuters story posted on NewsMax.com, President Clinton--shown here as a young man with President Kennedy--reaffirms his support for the solutions to African AIDS, namely, increased testing, prevention and providing existing drugs. As reported by Topix.net, with many celebrities paying between $25,000 and $200,000 per table at Clinton’s 60th birthday party, millions more were raised for fighting HIV. And the Clinton-Hunter Development Initiative has also been launched with $100 million of seed money from Scottish philanthropist, Sir Tom Hunter. Their laudable goal: fighting global poverty.

FAIR's Founder Challenges Hollywood's
Sharon Stone to a debate

In a letter addressed to Sharon Stone's Commercial Agent, Sharon Sellars, of ICM Talent, FAIR's Founder invites Ms. Stone to a debate on the need for such disproportionate funding for HIV/AIDS over all non-AIDS illnesses on a national television news show or at a more localized setting. FAIR awaits Ms. Stone's response. To see our Founder's invitation click on Ms. Stone.

 

Take a Stand with a "Click, copy & Paste"

We have an organ-donor crisis in the USA. 2.3 million people die every year, yet only 7,593 were donors last year after they died. Over 92,700 are on waiting lists and one dies every 90 minutes while waiting. Altruism is helping, but new organ donor policies are urgently needed to stop the suffering and the dying. Please click here and you can easily send a prepared letter in support of new organ donor policies to President Bush and your Congresspersons today....and remember...tell your family you want to save lives some day. Yes, each donor has the potential to save eight lives and benefit fifty others with organ and tissue donation. From the heart, the ill say, "thank you, in advance, for the 'Gift of Life'!"

Chairman of the Nat. Kidney Foundation squares off against USA Today Editor on need for new OD policies

The Chairman of the National Kidney Foundation opposes testing new organ donor (OD) policies. USA Today, our Founder and John Heaney of the Organ Donation Blog Organomics disagree. Read their Opinion Editorials and letters to the editors here.

A Potentially life-saving article for those on waiting lists

Are you waiting for a liver transplant.  This article in the LA Times may very well save your life and result in your being transplanted years sooner and with much less time waiting and suffering.

FAIR Adds Informative New Table to "The Sixteen"
Page Courtesy of HELP!

When FAIR was born, we profiled sixteen diseases that killed more Americans than AIDS in 1999. Our thanks to C. N. Gordon of Help &  Education for Liver Patients (HELP!) for a graphic description of the sixteen diseases that now kill the most in the USA and in California. Click on "The 16" and scroll down to view her great work for FAIR.

"Flatlining--NIH's Budget Freeze Could Stall
Crucial Studies of Disease"

In this informative exposé by Elaine S. Povich for the American Association for Retired Persons with revealing statistics that support FAIR's position, one of many quotes comes from Sam Gundy, MD, Chairman of the Alzheimer's Association's medical & scientific advisory committee: "The great progress in Alzheimer's research....is threatened. For the full article: click on the AARP Logo

Celia Farber

Recently, Harper's Magazine stunned the HIV community and the publishing industry by publishing Celia Farber's (pictured to the left) expose, AIDS and THE CORRUPTION OF MEDICAL SCIENCE. Ms Farber and Harper's were severely criticized by AIDS activists. A group of scientists and physicians, Rethinking AIDS, has released a rebuttal finding "no serious errors." Ms. Farber has written a new book entitled "Serious Adverse Events: An Uncensored History of AIDS" that Gal Beckerman of the Columbia Journalism Review calls "an engaging piece of investigative journalism [that] exposes deep problems with the standards of medical research." Farber's book is available at Amazon.com by clicking on her picture.

FAIR Joins 590 organizations in support of HR 810

FAIR joined with 590 organizations in support of HR 810, the House Resolution whose goal is to move stem cell research forward in the USA. Two HIV/AIDS organizations participated. To see the organizations "The FAIR Foundation" joined with, read the letter here utilized to contact Senators throughout the USA.
 

Cancer Institute's New Director Talks of Cutbacks

A surgeon who was appointed by President Bush this week to lead the National Cancer Institute said recently that he had great hopes for finding new nontoxic cancer drugs but that given a shrinking of resources, some of the Cancer Institute’s programs would probably have to be phased out. Read Gardiner Harris's article here, which lends credence to the need for fairer and more equitable distribution of taxpayer supported bio-medical research.

Your State?

Although the FAIR Foundation focuses its efforts on fairer research allocations, we thought you might be interested in what your state is receiving in HIV/AIDS non-research funding that helps total $2.7 billion: click here.
 

FAIR's Request to ADA 2007 Scientific Sessions

The American Diabetes Association's Epidemiology Symposium group requested topics from its members for their 2007 Scientific Sessions. FAIR responded with a request that a focus be “Ethical Issues in the allocation of Federal dollars for disease research” and asked to be a presenter. You may view both here.

The HIV/AIDS Clinical Trials Parade Continues

In May there were 1,742 HIV/AIDS Clinical Trials, in August, 1,865, in October 2,233, in June it was 2,520. Now it is 2,539. Will this pace continue? We'll keep reporting it for you. Find out how many for your disease by clicking here. For example, there are a total of only 272 for Alzheimer's Disease, 296 for COPD, 340 for hepatitis C and 33 for our Focus Disease of the Month: Muscular Dystrophy.

On behalf of Rare Illnesses, Send an Alert
to your Politicians today!

FAIR Members' Soapbox Alerts continue; this month to those suffering from orphan (rare) diseases. To easily send an alert to President Bush, VP Cheney, your Senators and Representatives today on behalf of those with rare illnesses, click the Soapbox logo!

Leave A Legacy by Remembering FAIR

Please consider remembering the FAIR Foundation in your estate planning. Every donation to FAIR counts in the ongoing fight for fair and equitable governmental research funding. To leave a legacy with estate planning, make a gift in memory of a loved one (or friend) or to honor someone simply click here. Thank you for your ongoing support!

 

Focus Disease of the Month: Muscular Dystrophy

• Muscular Dystrophy refers to a group of more than 30 genetic diseases within nine major groups characterized by progressive weakness and degeneration of the skeletal muscles that control movement. Muscles are made up of thousands of muscle fibers. The disease causes muscle degeneration, progressive weakness, fiber death, fiber branching and splitting and, in some cases, chronic or permanent shortening of tendons and muscles.

• Muscular Dystrophy is serious: All forms of MD grow worse as muscles progressively degenerate and weaken. The majority of patients eventually lose the ability to walk. Some types of MD also affect the heart, gastrointestinal system, endocrine glands, spine, eyes, brain, and other organs. Respiratory and cardiac diseases are common, and some patients may develop a swallowing disorder.

• Muscular Dystrophy morbidity: Muscular dystrophy is considered an orphan (rare) disease, but it should be noted that its incidence varies, as some forms are more common than others. Its most common forms in children, Duchenne and Becker muscular dystrophy, alone affect approximately 1 in every 3,500 to 5,000 boys, or between 400 and 600 live male births each year in the United States. Some types of MD are more prevalent in certain countries and regions of the world. Most muscular dystrophies are familial, meaning there is some family history of the disease.

• Muscular Dystrophy and prognosis: The prognosis for people with MD varies according to the type and progression of the disorder. Some cases may be mild and progress very slowly over a normal lifespan, while others produce severe muscle weakness, functional disability, and loss of the ability to walk. Some children with MD die in infancy while others live into adulthood with only moderate disability.

• Is muscular dystrophy communicable? NO! You cannot catch it and, in addition, it cannot be brought on by injury or activity.

• Muscular Dystrophy and gender Duchenne MD is the most common form of MD and primarily affects boys. It is caused by the absence of dystrophin, a protein involved in maintaining the integrity of muscle. Onset is between 3 and 5 years and the disorder progresses rapidly. Most boys are unable to walk by age 12, and later need a respirator to breathe. Girls in these families have a 50 percent chance of inheriting and passing the defective gene to their children.

• Muscular Dystrophy and Age: Some forms of MD are seen in infancy or childhood, while others may not appear until middle age or later. Facioscapulohumeral MD usually begins in the teenage years. It causes progressive weakness in muscles of the face, arms, legs, and around the shoulders and chest. It progresses slowly and can vary in symptoms from mild to disabling.

• Muscular Dystrophy and Jerry Lewis's Muscular Dystrophy Association (MDA) Labor Day Telethon: The first MDA Labor Day Telethon was broadcast in 1966 by just one station in New York City. It was the first televised fund-raising event of its kind to raise more than $1 million. Some 250,000 volunteers across the country will be involved in the Telethon over this Labor Day weekend. The 2006 Jerry Lewis MDA Telethon is the 41st annual Labor Day show. It will be broadcast on some 190 “Love Network” stations across the country and can be seen on the Internet at www.mda.org. Ed McMahon is the anchor of the Telethon, and the 2006 show will be his 39th.

• Muscular Dystrophy and Treatment: There is no specific treatment to stop or reverse any form of MD. Treatment may include physical therapy, respiratory therapy, speech therapy, orthopedic appliances used for support, and corrective orthopedic surgery. Drug therapy includes corticosteroids to slow muscle degeneration, anticonvulsants to control seizures and some muscle activity, immunosuppressants to delay some damage to dying muscle cells, and antibiotics to fight respiratory infections. Some individuals may benefit from occupational therapy and assistive technology. Some patients may need assisted ventilation to treat respiratory muscle weakness and a pacemaker for cardiac abnormalities.

• Muscular Dystrophy and Research Funding: In 2007, the NIH is spending only $39 Million dollars on muscular dystrophy. Compare that to $108 million on Multiple Sclerosis, $191 million on mental retardation, $524 million on tobacco and $2.9 billion on HIV/AIDS. Muscular Dystrophy and all other diseases except HIV/AIDS would receive larger research allocations under the FAIR Foundation's policies.

• Video: To view a powerful 14 minute video by ABC Television with striking quotes by many well-known celebrities and politicians that illustrates the need for more fair and equitable funding, Click HERE

Statistics from the National Institute of Neurological Disorders and Stroke (NINDS) and the Muscular Dystrophy Association.

In the fight for fairness in funding to balance the scales of justice, remember that every new member counts. We have thousands of members and supporters in all fifty States and the District of Columbia but we need many more to impact our nation's Congresspersons and the President. Please, forward this newsletter to your friends and associates now with your personal recommendation that they join FAIR for free today by their clicking on the scales of justice!

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 government 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.