FAIR NEWSLETTER 

National Magazine Prints FAIR Foundation
Article calling for change in Research Funding

Hepatitis Magazine courageously printed a FAIR Foundation article that highlights the great gap between AIDS research funding versus the dollars spent on hepatitis B and hepatitis C. The full story here.

Fairness Requested from TV's "Survivor,"
"The Apprentice," and from Donald Trump

When many diseases kill thousands more children than AIDS, should the bias continue for funding AIDS pediatric research? We suggest alternatives to Mr. Trump and the Producer here.

A FAIR Member's Opinion Editorial
 generates Strident Attacks

On behalf of FAIR, Phyllis Wit submitted an article to her Palm Springs, CA newspaper and she called for fairer and more equitable research allocations for persons who have had a stroke. Phyllis, who is 80-years young and a retired Speech Pathologist, was not prepared for the newspaper changing her title to inflame the topic, not was she prepared for the vituperative attacks by AIDS activists. Read it all, including our published response, here.

NYC Foster Kids AIDS Scandal

As reported by FOX News, the British Broadcasting Corporation (BBC) has accused New York City’s Administration for Child Services and drug companies, such as Glaxo SmithKline (GKS), of experimenting on HIV-positive foster children with untested and dangerous anti-AIDS drugs. Read Wendy McElroy's FOX News Channel unsettling report here.

Associated Press: South Africa Attacks US
Health Officials over AIDS Policy

President Thabo Mbeki's ruling party published a stinging attack Friday on top U.S. NIH health officials, accusing them of treating Africans like "guinea pigs" and lying to promote a key AIDS drug. Story here.

Traveling with FAIR

FAIR Founder Richard Darling, DDS, has been traveling and giving FAIR Foundation video and PowerPoint presentations in various cities to hundreds of citizens. Follow the picture trail here.

Our Focus this Month: Orphan Diseases

•  Orphan diseases are diseases that are rare and have not been "adopted" by the pharmaceutical industry because they provide little financial incentive for the private sector to make and market new medications to treat or prevent such illnesses.

•  Orphan diseases and occurrence: there are over a thousand orphan diseases from ACTH Deficiency to the Zollinger Ellison Syndrome. To see an expanded list, click here.

•  Orphan diseases causes great suffering: For example, Alagille Syndrome, which one has at birth, causes yellowing of the skin (jaundice), severe itching, poor weight gain, vitamin deficiency, heart murmurs, enlarged liver, hard nodules on the skin, possible liver and/or kidney failure with a need for liver transplant.

•  FAIR Profiles and remembers Allyson.... who was diagnosed with the Orphan Disease, Pseudomyxoma Peritonei (PMP). Since this rare cancer afflicts only 250 Americans a year, it has no lobby, no ribbon and it gets little research money. PMP originates in the appendix and eventually causes the appendix to burst and to scatter tumor cells. PMP doesn't metastasize, but it cannot be entirely removed and it doesn't respond to radiation and chemotherapy. The temporary solution is grueling repetitive surgical procedures and eventually Allyson had no more organs left to surrender and she relied on a feeding tube in her neck that took 12 hours to nourish her. Why did Allyson fight so hard to live? She fought so that she might have few more days with her children, the youngest whom is just seven years old. Leaving behind a devoted husband and four lovely children, Allyson Karson Gries departed this life at age 43. Her courage stands as a model of excellence for all who are ill.^*

•  

• Ramona Campuzano, Founder of the Tucson Organ Transplant Support Group. Read Ramona's touching story of her and her families incredible struggles against Polycystic Kidney Disease (PKD) and her second chance at life here.^*

• Orphan Diseases and the argument "Why allocate funds on diseases that affect so few?" Because we are a compassionate nation formed with the basic premise that the minority must have rights to protect it from being mistreated by the majority. That is why we have added orphan diseases to our Secondary Factors. This will insure they wiill receive more funding (see # 9 here).

• Fairness? Our government's average expenditure on each of the 1100 orphan diseases is 1 million dollars, which we believe is insufficient. All diseases except HIV/AIDS would receive larger research allocations with our recommended policies.

• Facts on orphan diseases from NORD (National Organization for Rare Diseases).

• ^**Our gratitude to Michael Fumento and Cynthia Hutchinson for providing information on Allyson Karson Gries and Ramona Campuzano, respectively, that was utilized in this Newsletter.

• Patients with Pseudomyxoma Peritonei (PMP) are urged to join the PMP Belly Button Club, an online support group for those afflicted with PMP and other associated cancers.

Please Consider The FAIR Foundation for
your End-of-Year Charitable Giving

Cash Donations are always tax-deductible; simply click below

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. Member sign-up information is confidential.

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

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