Today's Headline News-Traveling with FAIR  To Congress FAIR's Founder, Dr. Richard Darling, gave presentations every half hour for four days to the Legislative Health Assistants working for the Senators and Representatives on their respective Appropriations Committees. He called on change in funding by Congress and the National Institutes of Health to insure fairness. Click on the Capitol building to see over forty photos of the Assistants and to read the exact information Dr. Darling left for these Senators and Representatives. TO NORD's 22nd Annual Convention The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with six thousand rare or "orphan" diseases and assisting the organizations that serve them. The FAIR Foundation was an exhibitor at this years event and dozens of new members joined our organization. To see pictures from this informative convention, click the NORD logo. To Chicago in Five Days Our Founder will be giving a FAIR presentation in Chicago on Oct 28th at the Georgia Doty Health Education Fund's "2005 Hepatitis & HIV Health Disparities Conference." This event, which is free to the public, features many excellent speakers, including author, activist and comedian, Dick Gregory. Dr. Darling would love to meet you and have you in attendance. For more details on the event, click on Dick Gregory's picture and we hope to see you there.

Funding for HIV/AIDS Research is Appropriate
because it May Help Your Disease

In Palm Springs, CA's newspaper, The Desert Sun, the CEO of the large HIV/AIDS service provider, the Desert AIDS Project, makes the case for HIV/AIDS funding being appropriate because it may help your disease and he quotes an amfAR (American Federation for AIDS Research) physician. In addition, an AIDS advocate accuses FAIR of a bias toward the elderly. (Read their words here.) Click The Desert Sun logo to read the rebuttal FAIR submitted to The Desert Sun, which includes information on the exorbitant salary structure at amfAR as well as on amfAR's allocations of salaries versus research grants.

The HIV/AIDS Clinical Trials Parade Continues

In May we reported 1,742 research clinical trials for HIV/AIDS. In August there were 1,865. Today there are a total of 2,233. Find out how many for your disease by clicking here.

FAIR's members are continuing to utilize a free service to contact President Bush and VP Cheney for fairness in funding. Send a "Soapbox Alert" to our leaders that calls for more funding for orphan diseases by clicking here. (An orphan disease is a rare illness and therefore drug companies don't engage in the necessary research because of the inability to achieve a profit on their investment.)

Bill Gates Funded Hepatitis C Research Begins

With Bill Gates funding, researchers at the Columbus Children's Research Institute will join with Emory University to investigate strategies for curing chronic hepatitis C. Investment is appreciated, but tiny compared to 5 billion granted for HIV/AIDS, malaria and TB. Click here.

CDC HIV/AIDS Funding

FAIR addresses the research funding differentials between HIV/AIDS and other diseases by the NIH. In addition, the Centers for Disease Control also expends significant dollars for HIV/AIDS for other programs. To see the amount spent on HIV/AIDS in your state, click the CDC logo, then compare to funding for your disease.

Focus of the Month-Three Orphan Diseases:

Beckwith-Wiedemann Syndrome (BWS)

• BWS is an overgrowth disorder that is thought to be due to an alteration in one's genes.

• BWS Symptoms that make the diagnosis:  There are 30 such symptoms. Some of the most common are an enlarged tongue, body overgrowth (increased birth weight, height and head circumference as well as overgrowth of one half of the body or of one limb while the rest of the body grows at a normal rate), omphalocele (failure of abdominal wall closure), hypoglycemia (low blood sugar), enlarged abdominal organs, usually the kidneys, liver, spleen, adrenals and pancreas, and other differentiating physical characteristics including a strawberry mark commonly found on the forehead and eyelids. Patients with BWS are also at an increased risk of developing certain types of cancer.

• BWS and frequency: BWS strikes 1:15,000 births.

• BWS and Cognitive Development: Overall, intelligence is usually normal, although BWS has previously been reported in association with mild to moderate mental deficiency (due to hypoglycemic episodes or to inherited alterations in cells).

• A Parent's Focus: Yahoo Groups has a BWS List Group where parents can go to contact other parents on the many topics that come up in the life of a child with BWS. To join, click here.

• BWS support groups:

• Your children may be eligible for free or low-cost health insurance from the Dept. of Health and Human Services. Click here.

Primary Biliary Cirrhosis (PBC)

• What is PBC? PBC  is a slowly progressing disease of the bile ducts inside the liver. In PBC, the bile ducts in the liver become inflamed, which causes scaring that eventually blocks and destroys the bile ducts. Bile, which is needed for digestion of fat in the intestines, is produced in the liver and leaves it through these ducts. When the ducts are damaged, bile builds up in the liver and damages liver tissue.

• PBC and a cure? There is no cure. The cause of PBC is unknown, but because of the presence of antibodies acting against the tissues that created it, it is thought to be an autoimmune disease where the body starts attacking its bile ducts. PBC is not caused by any action on the part of the patient such as drinking alcohol or harmful behaviors.

• PBC Symptoms: Jaundice (yellowing of skin and eyes from excess bile in the blood), fluid accumulation or edema, darkening of the skin, and tear and salivary glands may not function well, causing dry eyes and mouth. Arthritis and thyroid problems may be present, as well as osteoporosis, severe bleeding from veins in the esophagus or gut, and confusion (encephalopathy) from buildup of toxins in the brain not filtered by the liver. The bones can become fragile, leading to more risk of fractures. Itching, frequently severe, and fatigue are common symptoms. Itching is caused by bile entering the bloodstream.

• End Result: The development of cirrhosis (severe scarring of the liver) is the end result of PBC.

• PBC Discriminates against women:   Women get the disease 10 times more often than men. It usually begins between the ages of 30 and 60.

• PBC treatment is directed at managing symptoms and slowing down liver damage. Transplantation is now a standard form of treatment for advanced disease. Liver transplantation is successful in many patients with end-stage liver disease resulting from PBC.

• PBCers USA & Worldwide Internet Support Groups: Excellent groups providing a wonderful source of support and education for those who suffer from PBC and other autoimmune liver diseases include the following: PBCers USA, The PBC Foundation UK and the Canadian Liver Foundation.

Myasthenia Gravis (MG)

• MG is a form of Muscular Dystrophy in which the immune system attacks the body’s own tissues (“autoimmune” disease); the attack occurs at the junction between nerve and muscle and targets the part of a muscle cell that receives signals from a nerve cell.

• MG's Cause: More research funding is needed because the cause is unclear; researchers suspect viruses or bacteria might trigger the autoimmune response; the thymus gland also seems sometimes to play a role in the disease

• MG discriminates against women: it is one and a half times more common in women than in men. MG can appear at any age.

• MG Symptoms: fatigue and weakness of voluntary muscles; partial paralysis of eye movements, double vision, droopy eyelids; weakness and fatigue in neck and jaws with problems in chewing, swallowing and holding up the head; weakness can become more generalized.

• MG Progression: usually reaches maximum severity within 1-3 years of onset.

• MG cause? There appears to be a genetic predisposition to autoimmune diseases.

• MG support group and Chat rooms: For adults and children-click here.

• Orphan Diseases and Research Funding? Why does FAIR recommend more funding for the six thousand orphan diseases? Because the NIH spends only $1.2 billion on them which is $200,000 per disease, on average. We believe that is grossly insufficient Orphan Diseases and all other diseases except HIV/AIDS would receive larger research allocations under the FAIR Foundation's policies.

Facts on BWS from the Beckwith-Wiedemann Syndrome.org, Beckwith-Wiedemann Support Network and Myrna Nieves, MD's Pediatric Bulletin. Facts on Primary Biliary Cirrhosis from Jackson Gastroenterology, National Digestive Diseases Information Clearing House; Howard J. Worman, MD. Facts on Myasthenia Gravis from the Muscular Dystrophy Association and the Department of Neurology, University of Chicago.

You have helped us grow rapidly, but we need more members to change Congress and the NIH. Please encourage new membership by posting this in chat rooms, Blogs, 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 ALL diseases, including Orphan (rare) diseases. 

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