Traveling with FAIR FAIR calls for redistribution of AIDS funding on CNN On CNN's The Situation Room with Wolf Blitzer, Dr. Darling called for a redistribution of a portion of HIV/AIDS funding to non-AIDS illnesses and rebutted Lance Armstrong's contention that the funding for cancer is "not fair." The video on redistribution of AIDS funding may be viewed  here, and the video rebutting Mr. Armstrong is available by clicking on Dr. Darling.) To the USC kidney transplant team in Los Angeles   After the FAIR Foundation presentation to the University of Southern California kidney transplant team, four of their surgeons endorsed our effort by joining FAIR. We are honored to have these new FAIR members and will continue our efforts to achieve fair and equitable funding for all patients suffering from renal disease as we believe the current NIH allocation of $50 per diabetic versus $3,040 per HIV patient is disproportionate. At Loma Linda University in Riverside County, CA FAIR presented to students at Chaplain Leigh Aveling's ethics class at Loma Linda University. The title of FAIR's presentation is "Ethical Issues in Federal Funding for Disease Research and in America's Organ-donor crisis. If you would like our Founder to come to your city to present, simple email us at fair@dc.rr.com. We are grateful for the new FAIR members that joined after our presentation. To see a picture of Chaplain Aveling, an honored member of our Board of Directors, and his class, click here. To pharmacists in Palm Springs, CA In Palm Springs, California, FAIR's Founder, Dr. Darling, presented to a convention of pharmacists sponsored by PPSI (Pharmacy Planning Service, Inc. After his speech, audience members signed up as FAIR members, a common occurrence. To see slides and pictures from his presentation, click here.

FAIR Disputes CDC HIV/AIDS Deaths estimates

The CDC has reported HIV/AIDS deaths in the USA from 2001 to 2005 to be essentially unchanged from a low of 16,316 (2005) to a high of 17,453 (2004. Is that possible when the individual states report a much lower death total of 11,825. For example, in California's newly infected patients, deaths have dropped 99 percent from just under 10,000 to 118 as of 12/31/06? We recommend that the CDC epidemiology team contact the individual states for more relevant data rather than relying on subjective techniques to estimate the number of patients who have HIV and have died of AIDS.

California's Stunning Success against HIV/AIDS Continues

As of 2/28/07, deaths of newly infected HIV/AIDS patients had fallen 99 percent from a high of just under 10,000 in 1992 to 140. In addition, the overall HIV/AIDS deaths had fallen 89 percent to 896.  NOTE! the California Office of HIV/AIDS Case Registry has told FAIR that the number of HIV/AIDS deaths reported on this page INCLUDES deaths from non-AIDS causes such as auto accident, assault, suicide, etc.  Therefore these deaths totals, such as 140 reported above, are actually too high and the number of deaths in HIV/AIDS patients from HIV associated infections is actually lower.

FAIR Applies to Testify before House Subcommittee

FAIR's Founder has requested to testify before the House of Representatives Appropriation's Subcommittee regarding our desire for fairer and more equitable NIH bio-medical research allocations. The Subcommittee oversees NIH research funding. To read Dr. Darling's request, Click on Congressman Obey's picture. He is the Chairman of the Subcommittee and represents Wisconsin's 7th Congressional District.
 

Who can testify before the Senate Subcommittee?

You cannot apply to testify before the Senate Appropriations Subcommittee. One must be invited and be a high profile individual or Hollywood star such as Elizabeth Taylor, Michael Fox or an NIH official. Ms. Taylor testified successfully for more AIDS funding, Mr. Fox asked unsuccessfully for more money for the disease that he is afflicted with--Parkinson's disease. To view a powerful video produced by ABC's 20/20 and the American Diabetes Associations that is the first 10 minutes of every FAIR national presentation, click on Elizabeth. She and Michael star in it, but keep in mind Michael's admission in his book that he did not take his medicine before he testified, and that this fact was not disclosed to the Subcommittee before his testimony. Thus, the Subcommittee was not aware that his body was shaking because he had not taken his meds.

Please help increase overall NIH funding today
with fairness for all!

FAIR is not only working for fairer distribution of existing funds, but also for an increase in overall research funding. A Congressional letter in support of a 6.7 percent increase in NIH funding for each of the next three years is being circulated by a bi-partisan group of members of the House of Representatives and they need your support. Please contact your representative and urge him/her to be a co-signer of this letter. At this link, you can easily send an email (or obtain the mailing address for your representative) and communicate your desire that he or she co-sign this important letter and that if the increase is obtained, the full amount should be allocated to non-AIDS illnesses. For example, a 6.7 percent increase to HIV would be benefit that disease by approximately $600 million whereas for diabetes it would only be an increase of $201 million and rare diseases would receive very small increases (e.g. cystic fibrosis would get just $17 million for research).

WHO's Global Diabetes Forecast May Be Far Too Low

The FAIR Foundation appreciates our members providing stories of interest to us at fair@dc.rr.com. An example is this excellent article provided by FAIR member Silvia Hinojosa Price, RN. For the full story on the real possibility of the World Health Organization (WHO) seriously underestimating diabetes cases, click the logo.

FAIR sends questions for Dr. Zerhouni to many LHA's

Various Senate and House legislative health assistants working for the Appropriation's Subcommittees overseeing NIH funding requested sample questions that they might pose to the NIH Director. Our Founder provided such questions and you may view them by clicking on NIH Director Elias Zerhouni.
 

Past AIDS Clinic Director pleads guilty to $1Billion Fraud

A South Florida doctor pleaded guilty to helping cheat investors out of nearly $1 billion by using fraudulently low life expectancies for policyholders after previously submitting fraudulent claims to Medicare for treating AIDS patients at the CenterOne Clinic in Fort Lauderdale. Full story.

FAIR Profiles States: Delaware & Georgia

What are the top ten causes of death for the citizens of Delaware and Georgia as reported by the Centers for Disease Control and Prevention (CDC)? Is HIV/AIDS one of them? If not, how do the top ten compare with from HIV? For the top ten causes of death, click on their map. For HIV/AIDS deaths in those states, click 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, and this month the total is 2,699. Find out how many for your disease by clicking here. For example, there are a total of only 2,172 clinical trials for Diabetes, 316 for Alzheimer's Disease, 365 for COPD, 391 for hepatitis C and only 74 for our Focus Disease of the Month as presented to you below.

UOTA presents "A Musical Tribute to the Gift of Life"

If you are in Southern California on April 12th, don't miss the incredible jazz musician Michael Paulo and friends perform at the United Organ Transplant's Annual gala. Plus, for a very small donation to enter an opportunity drawing with--to your benefit--only a few participants, you can win two days of free recording studio time that includes a noted Producer in LA at a major studio where John Lennon, Diana Ross and dozens of other major stars have recorded their music. What does UOTA do with the donation: they work to implement new organ-donor policies to reverse America’s organ donor crisis and they provide educational, emotional and financial support to pre- and post- transplant patients. Bravo! More information and tickets are available by clicking on UOTA's logo.

FAIR Members' Soapbox Alerts continue..

...this month for those suffering from orphan (rare) diseases like ALS. To easily send an alert today to President Bush, VP Cheney, your Senators and Representatives in support of fairer funding for orphan illnesses, click the Soapbox logo!

FAIR Membership is Important
Help us recruit new members today!

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 clicking on the scales of justice to the left!

Focus Disease of the Month: 
Amyotrophic Lateral Sclerosis  (ALS)
(aka Lou Gehrig's disease)

We are honored to profile Ms. Peggy Chun

Occasionally FAIR profiles a courageous patient and we have never been introduced to a patient of the stature and courage of one Peggy Chun, shown here creating a mosaic of Blessed Damien. How? Peggy, who is paralyzed by ALS, communicates by pointing her eyes to letters and numbers on a “spellboard” held by FAIR Foundation member and Holy Trinity School teacher Shelly Mecum while fellow volunteer Christine Amos writes down each letter Mecum calls out.

Note Shelly's description of Peggy and how she creates her art:

"Peggy is a renowned artist, famous for her whimsical watercolors and lush landscapes of the Hawaiian Islands. In 2002, she was diagnosed with ALS and soon, this disease progressed to where she could no longer hold the paint brush in her right hand. She refused to quit painting and trained her left hand to paint in less than an hour. As the disease progressed she could no longer hold the brush in her left hand, so Peggy made a paint brush to hold in her mouth and continued to paint. As ALS progressed, Peggy lost the use of her mouth. Indeed, only Peggy's eyes could move and she was completely paralyzed. This was a troubling time because Peggy could no longer speak or paint.

Through the gift of technology, Peggy began using the ERICA. (Eye Response Interface Computer Aid). Peggy's left eye movement was tracked by a laser camera which is connected to a computer. Peggy could use the computer simply by gazing at the computer screen. She began painting digitally with a computer software program.

However; Peggy's eyes became too dry--She cannot blink!--so lately she has been unable to use her computer to talk to us and create new paintings. This did not stop Peggy from creating! We use a very simple spellboard and Peggy spells her thoughts to us. Through her eye movement, she spells her message. Each letter has two numbers and they divide the alphabet into groups: 1:ABCD 2:EFGH 3:IJKL 4:MNOP 5:QRST 6:UVWXYZ. Peggy has 6 cardinal gazes which we can distinguish. Presently she is spelling lesson plans for the children at my school who are working with her to create a mosaic. She tells them what colors to use and how to paint the tiny squares. Later she will have another artist put these thousands of squares together to create a mosaic of Father Damien of Molokai, Hawaii. Peggy calls this form of painting--"Painting by Direction"--Just like the Renaissance artists who directed the brushstrokes of their apprentices.  

Peggy also paints directly through brainwave technology. She thinks, paints and controls the palette of color through her thoughts. She is the only brainwave artist on the planet! Her latest creations involve the use of her nose (see that here). Peggy missed the feel of paint--so her assistant painted her nose and rolled the paper across her nose exactly as she spells on her spell board--very abstract and gorgeous." 

For the full story that accompanied the picture above, as published in the Hawaii Catholic Herald newspaper, chick here, and to view the beautiful art this amazing woman has created, click on Peggy in the photo.

To Peggy, we say, "You go girl!!" You are our hero and we send you our love and hugs!!

June UPDATE! Students at Hawaii Pacific University have won a national award on their documentary that features Peggy. Hawaii's KGMB News brought this to the public's attention in this video as seen on YouTube.

October UPDATE! Shelly Mecum has written a book with Peggy, The Watercolor Cat. Once you get here, click on the cat for this powerful presentation!

• ALS is a progressive disease of the nerve cells in the brain and the spinal cord that eventually lead to their death. When those cells die, the ability of the brain to initiate and control muscle movement is lost.  

• ALS symptoms: Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. Yet, through it all, for the vast majority of patients, their minds remain unaffected.

• ALS and treatment: ALS cannot be reversed, therefore the treatments are aimed at making the patient more comfortable and to slow the progression of symptoms.  The drug Rilutek is the first and only medication approved by the Food and Drug Administration for slowing ALS. Researchers are investigating many other medications for their usefulness in treating amyotrophic lateral sclerosis. Examples include the antibiotic Minocin, the breast cancer drug tamoxifen, the antioxidant coenzyme Q10 and a nerve-nourishing drug called insulin-like growth factor (IGF-I). Increasingly, researchers are studying drug "cocktails" — which are combinations of medications. Other helpful treatments include speech therapy, nutritional education, physical and occupational therapy, and breathing assistance.

• ALS--race and age: 93% of patients are Caucasian. Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties.

• ALS and diagnosis: ALS is a very difficult disease to diagnose. To understand the importance of getting a second opinion, click here.

• ALS and stem cell research: Stem cell therapy is another avenue of research. Early studies show that stem cells may have the ability to repair or replace the motor neurons damaged by ALS, but clinical use or clinical trials with stem cell therapy is still a long way off.

• Is ALS hereditary? ALS is directly hereditary in only a small percentage of families. The majority of patients with adult-onset ALS (90%) have no family history of ALS, and present as an isolated case.

• ALS can be fatal: About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.

• FAIRness in Research Funding?? In 2007, the NIH is spending only $43 Million dollars on ALS. Compare that to $2.9 Billion on HIV/AIDS. The tops AIDS researcher recently admitted that there are great drugs for HIV patients--there are no such great drugs for ALS patients like Peggy. The FAIR Foundation's recommended allocation factors call for more funding for orphan (rare) illnesses like ALS as well as for all non-AIDS illnesses.

Facts on ALS from the ALS Association, and MayoClinic.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.