Points of Interest on NIH Research Allocations as of 03/13/08

The CDC estimates 16,316 AIDS deaths in the USA. We contacted every state-they say 10,984. Why the exaggeration? To see the number of HIV/AIDS deaths in your state, click here.

Cardiovascular Disease kills 870,000 every year, yet receives over 1/2 Billion less than AIDS with $29 spent on behalf of each CVD patient

The NIH is spending $3,052 on each citizen estimated as having HIV/AIDS

Diabetes kills more Americans than AIDS and breast cancer combined, yet the NIH spends only $50 on each  diabetic

Alzheimer's Disease kills 3.3 times more than AIDS, yet the NIH spends only $143 on each patient with Alzheimer's Disease

Parkinson's Disease death rate similar to AIDS yet the NIH spends $136 on each patient

Prostate cancer kills 2 times more than AIDS, yet the NIH spends only $182 on each patient with prostate disease

Hepatitis C (HCV) kills 12,000, yet the NIH spends only $25 on each HCV patient

Hepatitis B (HBV) kills 5,000, yet the NIH spends only $29 on each HBV patient

The flu (influenza) on average, now kills almost 2+ times more than AIDS. 
Flu: $199 million
AIDS: $2.3 Billion

COPD (Chronic Obstructive Pulmonary Dis.) = 126,128 deaths in 2003 yet the NIH spends only $5 on each patient

West Nile Virus cases in 2006: 4,269 cases and 194 deaths, which results in $14,757 spent in research per death. 2007 cases through 2/5/08 = 115 deaths, 3,576 cases. Does this justify this disparity in bio- medical research funding?

Sudden Infant Death Syndrome (SIDS) estimated deaths at 2,162. HIV/AIDS under 13 = seven deaths.

Total USA HIV/AIDS budget for 2007 totals just under 23 Billion. $17 Billion for care, cash & housing assistance for patients. Total AIDS Funding since day one: $$ 210 Billion dollars through 2007 (1/5th of a trillion) (From Henry J Kaiser Foundation)

The infection rate for AIDS throughout the entire world is 1 percent or less except in two countries, Sub-Saharan Africa and the Caribbean. See page 8 from UNAIDS here (large file, please be patient). For a specific country, click here.

For monthly totals of AIDS in India, click here.

SARS: "Current Situation" from the CDC states "there is no known SARS transmission anywhere in the world." Research monies  not disclosed by NIH. Press coverage:  disproportionate.

Monkeypox
cases confirmed in the USA: 37, deaths =0 in 2003. No further CDC reporting is available.

Statistical supporting links may be viewed here

Color pie chart and graph illustrating disparities in funding may be viewed here

Updates on Funding for your Disease of Interest is here.

Sixteen diseases killed a million more American than HIV/AIDS annually in 1999. There are more now.

Please take a moment to view our 28-member Board of Directors of physicians and disease advocates

To review all FAIR Newsletters, click here

We appreciate your submitting news stories of interest to us at fair@dc.rr.com

To view a powerful 14 minute video by the American Diabetes Association and ABC Television, Click HERE

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To email a template letter in support of fair funding to President Bush and your Congresspersons. Simply go here to contact them quickly and easily with a click, copy and paste.

View the total 2006 HIV/AIDS USA funding billions and the amount for each state, most of which is for social programs, housing assistance, cash payments, meds, etc.

To send a prepared letter to the President and your Congresspersons in support of new organ donor policies to reverse USA's organ donor crisis, click here.

FAIR's Privacy Policy may be viewed here.

FAIR is an acronym for Fair Allocations In Research.

FAIR is fair.

Volume 6: Issue 1
 

FAIR NEWSLETTER: March 2008
 


Experts considering redistribution of AIDS money

"If we look at the data objectively, we are spending too much on AIDS," said Dr. Malcolm Potts, an AIDS expert at the University of California, Berkeley." The world invests about $8 billion to $10 billion in AIDS every year, more than 100 times what it spends on water projects in developing countries. Yet more than 2 billion people do not have access to adequate sanitation, and about 1 billion lack clean water. Illuminating article

CNC diseases kill 2X that for the combined total of
HIV/AIDS, tuberculosis, malaria

Several of the worlds most eminent health scientists and organizations published a landmark global consensus in Nature Magazine (and reported in the American Diabetes Association "Diabetes News,") in which the nineteen authors report that Chronic Non-communicable Diseases (CNCD), such as cardiovascular disease, type 2 diabetes and many cancers kill twice as many globally as the combined total of HIV/AIDS, malaria, TB, maternal & peri-natal conditions, and nutritional deficiencies. We thank FAIR member Jerry Nairn in Arizona for bringing this informative news that places HIV/AIDS in proper global perspective to your attention.

An amazing world clock--see what is killing
globally as each second passes

Watch each second pass and as it does, you can see the changing death totals for non-communicable diseases referred to above such as CVD, cancer, respiratory diseases, and yes, you can also see the numbers for communicable diseases....like HIV. Click the clock.

Bill Gates encounters strong criticism
over HIV funding favoritism

"All over the country, people are furious about incentives for [AIDS] staff, [funded by Gates]" said Rachel Cohen, mission chief for Doctors Without Borders in an investigation by the LA Times, which states that by pouring most Africa contributions into AIDS, the resulting staff shortages have abandoned many children to more common killers: birth sepsis, diarrhea and asphyxia. Gates's focus on HIV, TB & Malaria has shortchanged basic needs such as nutrition and transportation, and undermined the effectiveness of the Gates's grants. Many AIDS patients have so little food that they vomit their free AIDS pills. For lack of bus fare, others cannot get to clinics that offer lifesaving treatment. Click on Mr. Gates.

Schwarzenegger budget reduces AIDS funding;
AIDS activists angry

Schwarzenegger's budget proposal reduces funding for HIV/AIDS programs by $11 million, including AIDS Education and Prevention, HIV Counseling and Testing, AIDS Epidemiology Studies and Surveillance, and California's AIDS Drug Assistance Program. Click on Arnold or his budget chart.

President Bush's 2009 NIH budget freezes money
for all except $300 more for global HIV/AIDS

President Bush's 2009 NIH budget freezes funding for all diseases/departments but still allows $300 millions to go to global HIV/AIDS, TB & Malaria efforts. If the President’s 2009 request becomes law, the Office of Budget estimates that the NIH will have lost one-seventh of its purchasing power for new research due to inflation. Full budget summary for all diseases, click on President Bush ....and for the amount for every disease, click here.

WHO: hire 6.4 million more workers for HIV
patients, spend $7 billion to do it

The World Health Organization (WHO) recommends hiring 4 million more low-skilled workers and 2.4 million more MD's, nurses, etc to help HIV/AIDS patients at a cost of $7 Billion. Click on the China Post logo

 
Travel with FAIR

...to Reno, NV with NV HCV Task Force and Univ. of Nevada School of Medicine CME Dept

Our President and CEO gave the FAIR presentation, "Ethical Issues in the allocation of research dollars and in America's organ-donor crisis" January 18th in Reno, Nevada at the Nevada Hepatitis C Task Force's First Annual HCV Conference sponsored by the University of Nevada School of Medicine. View pictures from the event and review the list of presenters and their topics.

...To Health Action Conference in Washington, DC with Speaker Pelosi , Senator Daschle, Dr. Fauci, et al

FAIR Board member, Bill Remak, presented our flyers and brochures at this well-attended Families USA Health Action 2008 DC conference to many attendees, including Speaker of the House, Nancy Pelosi, NIH NIAID Director and the man responsible for all of the impressive advances in HIV research and who oversees all HIV research funding, Anthony Fauci, MD, Governor Mark Warner, CNN’s The Situation Room’s Paul Begala, Senator Tom Daschle and others.  Bill also presented our missions in radio interviews. Dr. Fauci's PowerPoint presentation states $190 billion has been spent on HIV research through 2006. Through 2008 the total will be $230 billion--greater than 1/5th of a Trillion dollars. Videos of the conference presenters.

...to the Ventura County West Valley Chapter of TRIO:
Transplant Recipients International Organization

Our President and CEO, Dr. Darling, gave the FAIR presentation to TRIO, a wonderful organization that "provides a shoulder to lean on for the patients of organ transplantation, their families and caregivers and to donor families." Esteemed UCLA liver transplant surgeon, Mark Ghobrial, MD, was also honored at the event. For pictures, including stunning 81-year old liver recipient Margaret, who received her liver at age 73, click the logo.

At the above TRIO event, Dr. Darling met a passionate organ-donor advocate, Jerry Jackson who has volunteered to meet with CA legislators to promote Presumed Consent. Jerry teamed up with producer Dan Brumett to produce one of the most powerful organ-donor videos we've ever seen. It tells the story of both Jerry's life-saving liver transplant and of young Jimmy Younger who is dying of liver failure and their collective effort to promote organ donation--a video that encompasses various states, churches, coliseums, and more. Click on Jerry or Jimmy at Phoenix's Bank One ball park to see this very special presentation.

...to Denver, Colorado at ADA Conference
with thousands of diabetics

Once again, similar to the  avalanche of new members who joined in Phoenix, Seattle, Las Vegas, LA, etc. we were uplifted by the great support we received in Denver, Colorado. Indeed, one new member joined FAIR every 3.6 minutes for six hours. To view many of these new FAIR members, simply click on the ADA logo.
 


The media and HIV/AIDS hype refuted

(Note: the FAIR Foundation is an apolitical 501(c)(3) organization

"...the overblown [AIDS] panic, based more on politics than science, led to a gross misallocation of resources"

From Professor Karol Sikora, former chief of the World Health Organization (WHO) Cancer Program and Britain's top cancer expert: "...the vicissitudes of political correctness can dictate medical priorities....All those with HIV and AIDS deserve medical support, but the truth is that the overblown panic, based more on politics than science, led to a gross misallocation of resources...medical funds should be directed to the care and treatment of the elderly, not 'trendy politically correct' causes such as AIDS...we had the absurdity [in Britain] that the number of people in AIDS counseling, help lines and other jobs exceeded the conceived number of sufferers. Moreover, for every three AIDS victims there was one AIDS organization. A fortune was wasted on lecturing people who were never at risk." For the full Story, click on Professor Sikora.

South Dakota Headline News: AIDS/HIV increase

As reported in the Daily Republic, the South Dakota Dept. of Health announced an increase in HIV cases from 2005 to 2006. Was it a 25 or 35 percent rise? No, 3 percent. Was that 400 or 750 cases. No, an increase of 1 from 33 to 34. Headline news?

Headline from Vermont: "large increase in syphilis...
could contribute to spread of HIV"

In this article from the VT Dept of Health they report the "large increase in cases of syphilis.." Is it 1,000 or maybe 2,500. No, seven. In that article there are six words on HIV, yet the Kaiser Foundation includes HIV in their headline on the same story.

Woman Misdiagnosed With HIV Gets $2.5M

With New Jersey now requiring every pregnant woman to have an HIV test and many states moving in that direction for everyone, the information in this segment has important information for all who may be tested one day. Click on Audrey Serrano, who won $2.5 million in Worcester Superior Court and suffered greatly due to the misdiagnosis.

More appropriate headline? "Japan and Finland's HIV infections hit record high" or "Infections remain low"

You decide. Japan and Finland have populations of 127 million and 7 million respectively. Should the 1,048 HIV infections in Japan and the 190 in Finland have been both headlined as "record highs" or should it be emphasized how low these numbers are compared with the USA and Africa? One might note that TIME magazine reports Japan has over 7 million diabetics with a national expense of $8 billion while Finland has 290,000 with diabetes.
 

"Putting AIDS in Perspective" by Daniel Halperin

Daniel Halperin, senior research scientist at the Harvard School of Public Health, presents an expansive and thorough examination of the negative effects of HIV/AIDS favoritism globally. Sample: "With 10 million children and a half million mothers in developing countries dying annually of largely preventable conditions, should we multiply AIDS spending while giving only a pittance for initiatives like safe-water projects? We appreciate our Board member, Leonard Morse, MD, for bringing this excellent NY Times article to our attention.

FAIR to Newsweek: Stop HIV research favoritism

Newsweek magazine allows readers to submit their opinions in a full page article. Our President and CEO's submission is awaiting publication. Sample: "61 million Americans with cardiovascular disease, 21 million diabetics and millions of other non-AIDS sufferers will applaud a reasonable redistribution of HIV research funding to other illnesses."


FAIR's Board of Directors at work
In our continuing "get acquainted with the Board" series, we are
honored to profile the following Board members:

We are proud to announce the newest addition to our Board, Robert Gish, MD, Medical Director of the Liver Disease Management and Transplant Program at California Pacific Medical Center (CPMC); Division Chief, Hepatology and Complex Gastroenterology at CPMC Physicians Foundation; Associate Clinical Professor of Medicine at the University of Nevada Reno and at USF; Member of the American Assoc. for the Study of the Liver, the American Gastroenterological Assoc. and the American Society of Transplant Physicians. San Francisco, CA Web CV and informative radio interview by clicking "Hepatitis C" once you go here.


Sandy Rogers of Lahaina, Maui, Hawaii is FAIR's patient advocate for patients with Parkinson's Disease and Stroke. The latter disease incapacitated her beloved husband, Marvin, and eventually took his life after his courageous battle to survive as long as possible.

 


Lorenzo Rossaro, M.D., FACP, is Director of the Liver Transplant program and Professor and Chief, Division of Gastroenterology and Hepatology at the University of California, Davis Transplant Center in Sacramento, California. Dr. Rossaro is an internationally recognized authority on liver transplantation and liver disease (cirrhosis and hepatitis B and C). Web CV


Philip Rugo is FAIR's patient advocate for patients suffering from Alcoholic Liver Disease (ALD)> Philip is Director of the Harrison House Substance Abuse Rehabilitation Center in
Northampton, Massachusetts.



 

Ray Hill was named the 2008 Award Recipient at the Annual John P. McGovern Award Lecture Series for Community Contributions and Activism at the Univ. of Texas School of Public Health, Center for Health Promotion and Prevention Research. Ray, who in the past was a strident HIV/AIDS activist, is now focusing his attention to those with hepatitis C. He founded  Ray Hill's Prison Show which has been broadcasting since 1980.

A Passing: Board member, Bill Roberts, a
tireless crusader for patient wellness

When Dr. Darling first started the FAIR Foundation as ProrateNIH, Bill was there to guide him with corporate advice and counsel and he provided valuable advice until his recent passing. Bill's earlier résumé is clear testimony to his tireless work for patients in meeting their social security and state compensation needs. Bill was one of the co-founders of the National Association of Rehabilitation Professionals and they profiled him in their national newsletter. Bill was also a wonderful caregiver to his wife, Jewel, as she struggled with hepatitis C, had transplant and then lost her battle after two years. Bill had friends throughout America, and in the event they were not able to attend his services, his family provided their words for you. God bless you, Bill, and thank you again for helping us at FAIR.

FAIR's state profiles continue: California & Connecticut

What are the top ten causes of death for the citizens of California and Connecticut as reported by the Centers for Disease Control and Prevention (CDC)? Is HIV/AIDS one of them? For the top ten causes of death in California and Connecticut, click on their maps. For HIV/AIDS deaths in all states, click here.
 



yet it still receives 10 percent of the entire research budget

NYC deaths down to record low--
plummeting AIDS deaths a significant factor

In yet another example of the plummeting HIV/AIDS deaths in the USA, New York City's Dept. of Health reported record low deaths from all causes, and they pointed out that a significant factor has been the 16 percent drop in AIDS deaths from 2005 to 2006. Indeed, NYC's AIDS deaths have plummeted from a high of 8,302 in 1994 to 1,209 in 2006.--an 85 percent decline.

"..doctors now think .... a person with HIV will be able to live a more or less normal lifespan"

"Who said that? NAM/aidsmap, which describes itself as "an award-winning, community-based organization....delivering reliable and accurate HIV information across the world to HIV-positive people and to the professionals who treat, support and care for them." They continue, "NAM's publications are evidence-based and reviewed by two international medical panels (one consists of HIV-positive people), which ensure accuracy." NAM's quotes

However, HIV/AIDS experts now
complain of the effects of aging

Now that HIV/AIDS patients are living to older ages, their experts are now voicing concern of the effects of aging, such as COPD, diabetes, cancer, cardiovascular disease, Parkinson's and the lingering effects of a broken hip.

HIV treatment lowers risk of non-Hodgkin's
lymphoma and other illnesses

Treatment for HIV significantly reduces the risk of non-Hodgkin's lymphoma for ten years (story) and also reduces the incidence of peripheral neuropathy, anemia and kidney disease (story).

AIDS therapy in developing countries
produces excellent responses

Aidsmap also reported the positive impacts of AIDS drugs in several African countries were highlighted at the 15th Conference on Retroviruses and Opportunistic Infections in Boston. "These studies point toward successes in patient retention, immune recovery, and reductions in mortality."

President Bush: Our global AIDS policy is
"unbelievably effective"

In response to harsh questions while in Africa notifying everyone that he wants to double the HIV/AIDS, malaria & TB budget to $30 billion dollars, President Bush stated his policy for Sub-Saharan Africa and other countries has been "unbelievably effective."
 

Bono and artists raise another $42.6 mil for Africa

Irish musician and AIDS advocate, Bono, and British artist Damien Hirst recently raised another $42+ million at the Product RED art auction in New York City to benefit HIV/AIDS, tuberculosis and malaria programs in Africa, Reuters reports. The funding by our government for 6,000 rare diseases averages only $200,000 per disease.

Bill Gates's childhood friend donates $65M to HIV

The estate of Ric Weiland (seen at left), a high school classmate of Bill Gates and Paul Allen and one of the first five people to work at Microsoft Corp., has left $65 million to several gay rights and HIV/AIDS organizations, including the American Federation for AIDS Research's efforts spearheaded by actress Sharon Stone. Full Story.

The States continue great success against HIV/AIDS

 Illinois 93%, Kentucky98%, Minnesota 90%, Oklahoma 97%, Alaska 97%, Connecticut91%, Hawaii93%, Pennsylvania 95%, W. Virginia 92%, CA 89% and so on throughout the USA reflecting the excellent success of HIV drugs, prevention education and harm reduction policies (providing clean syringes to IV drug users). Click the map to see all states and their progress.

CDC's AIDS death totals: 16,316
FAIR's from each state: 10,984

The gap between the Center's for Disease Control's reporting of deaths in the fifty states and reality as evidenced by our communications with the Dept's of Health in all fifty states continues to widen.--now a 32 percent excessive discrepancy. The CDC has reported AIDS deaths from 16,000 to 17,000 for five years while the reality is that deaths are no higher than 10,984. Why the unwillingness to report AIDS plummeting deaths accurately? Is it to justify and keep present HIV/AIDS funding levels??

 

FAIR cancels new series; instead recommends
matchingdonors.com to those needing kidney transplant

In a previous newsletter we began profiling members in need of a kidney to survive in the hopes one of our members (now in all 50 states) would come forward to save their lives, but upon reflection we think it best that those with renal failure and those willing to donate a kidney contact matchingdonors.com. This unique organization's efforts have led to 63 successful transplant surgeries with 40 more scheduled to occur in the coming months. If you are in need of a kidney to survive, matchingdonors.com presently has 4,874+ people in their database who have agreed to be donors--you may be a match. If you are considering being a donor, 4,500 is a good number, but more donated kidneys are always needed due to difficulties in matching tissues between donors and recipients, so please contact them to donate. Matchingdonors.com even assists donors and recipients with free airfare and discount lodging when travel is necessary for testing and surgery. An example of matchingdonors.com success was recently reported in Glamour Magazine. Click their logo to view it.

57% more dying patients would be transplanted with
government and/or insurers reimbursing kidney donors

Two economists argue that America could ease its organ shortage for transplants by paying living donors for one of their kidneys or for a portion of their livers. They estimate that the annual number of U.S. kidney transplants would rise 44 percent and liver transplants would rise 57 percent. Click on the picture of a major solution to the organ-donor crisis: money.

$269,319 in net savings with paid
unrelated living kidney donors

In our last newsletter we told of the eminent physician,  Arthur J. Matas, MD,  (left) who has proposed allowing the government to reimburse donors with a combination of benefits, including cash and/or health insurance. Dr. Matas has also published an abstract showing a net $269,319 in savings with unrelated living kidney donors (LURD). In addition, a vendor program would save society >$90 000 per transplant.

FAIR adds Dr. Matas's proposal to template letter
in support of trial projects of new OD policies

After learning that 99 percent of the eminent co-signers of our template letter in favor of pilot projects of new organ-donor policies to reverse America's organ donor crisis favor his proposal, we added it and hope you will participate easily by just using your zip code. We have provided the letter for you to send to your Congresspersons, President Bush, et al, you only have to copy, paste and click.

FAIR to American Liver Foundation: "Please add
Dr. Matas's proposal to your OD resolutions"

In a letter to the ALF President and Chair of their Board of Directors, our CEO and full Board of Directors congratulated them on the ALF's support of Presumed Consent and Donation Benefits and urged them to also add Dr. Matas's proposal to their organ-donor (OD) policy. To read our letter, that was hand-delivered by our Board member, Bill Remak, click the ALF logo.


Britain's Prime Minister endorses Presumed Consent (PC)

AP Article: "A system of this kind seems to have the potential to close the aching gap between the potential benefits of transplant surgery and the limits imposed by our current system of consent," Britain's PM Gordon Brown (left) said." FAIR notes that the US Dept of Health and Human Services Advisory Committee on Organ Transplantation and the American Medical Association support pilot studies in selected states of Presumed Consent. In addition, the Organ Donation and Recovery Improvement Act has recommended trials and providing of funds for tests of programs such as Presumed Consent. FAIR applauds PM Brown and we urge President Bush and those who oversee (UNOS) our organ-donor crisis of one patient dying every 82 minutes to support trial projects of Presumed Consent.

Delaware introduces Presumed Consent Legislation

Under a proposal in the Delaware House of Representatives, all Delaware residents would become organ donors unless they opt-out of the system. That system, Presumed Consent, that exists in over twenty other countries is also being considering at this time in the Nevada legislature. For the Delaware story, click the state.

FAIR's Press Release: Immediate Action Needed to Reverse America's Organ-Donor Crisis

With one person dying every 82 minutes and 98,0000+ sick patients waiting for the "Gift of Life," you can help by simply copying this opinion editorial and sending it to media and President Bush. Click on the Please Help logo!

Waiting for a Liver Transplant?

Are you waiting for a liver transplant?  Which areas/hospitals are transplanting years sooner than others. To calculate your MELD score and find the region/state that is transplanting at the lowest MELD score, click the liver.
 

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, Now it is 3,408. Find out how many for your disease by clicking here. For example, there are a total of only 2,3222 clinical trials for Diabetes, 458 for Alzheimer's Disease, 552 for COPD, 477 for hepatitis C (many involving HIV & HCV) and for our Focus Diseases of the Month: Beckwith Wiedemann Syndrome = 2 (two).

FAIR Members' Soapbox Alerts continue

...this month to those suffering from orphan (rare) diseases like Beckwith Weidman Syndrome (BWS) and other non-AIDS illnesses. 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!

Focus Disease of the Month: 
Beckwith Wiedemann Syndrome (BWS)

  • To provide you with proper appreciation of how troubling this disease can be, we profile Cody Hendrickson and his extensive struggles since birth with BWS as told by his mom, Cheryl, in this touching description complete with informative pictures of Cody.
     

  • What is BWS?: is an overgrowth syndrome, one of several such medical conditions identified by geneticists.  BWS is named for the physicians who first described the association of body overgrowth (increased birth weight, height and head circumference), omphalocele (failure of abdominal wall closure), macroglossia (enlarged tongue), hypoglycemia (low blood sugar) and other physical characteristics. Patients with BWS are also at an increased risk of developing certain types of cancer.
     

  • BWS symptoms: Children with BWS may have any or all of the following features, and no two individuals are the same: large birth weight and length, hypoglycemia, Macroglossia (large tongue), malocclusion, omphalocele (incomplete abdominal wall closure), hemihyperplasia/hemihypertrophy, ear groves and pits, and nevas flammeus (strawberry mark commonly found on the forehead and eyelids).
     

  • BWS is rare: The prevalence of BWS is approximately 1 in 14,000 births.
     

  • FREE DVD on BWS from the Beckwith Wiedemann Syndrome Foundation is available here. Indeed, all of the facts on this page are being provided by BWSF, which was founded by Cody Hendrickson's mom, Cheryl.
     

  • BWS Database: A registry is a database (collection of information) to which people with this rare condition from around the world can contribute their medical information. Information gathered in such a way adds significantly to medical research. If a member of your family or someone you know has BWS, please consider having them contact the research team at Washington University of Medicine to find out more about joining the Registry. For more information about the BWS Registry, send an email to: bwsregistry@kids.wustl.ed.
     

  • Message to BWS parents and discussion about BWS is available in two excellent videos here. Please be patient in allowing them time to load.
     

  • BWS Newsletter: news and events regarding BWS may be obtained in a BWS newsletter by filling out the contact information here.
     

  • Fairness? The NIH is spending $3,052 on each AIDS patient while the amount spent on BWS is so small that there are only two research projects and the amount is not even listed by the NIH at their funding database. Clearly, more must be spent this orphan disease and the lack of research funding by the NIH for BWS and all orphan (rare) diseases is unfair and needs to be rectified.
     

  • Links, statistics and information from the Beckwith Wiedemann Syndrome Foundation.

The FAIR Foundation is growing fast, but we need more members to change Congress and the NIH. Please help us by forwarding this Newsletter on to your associates and friends. With strength in numbers, we WILL achieve fair and equitable NIH distributions for Beckwith Wiedemann Syndrome and ALL non-AIDS diseases. Member sign-up information is confidential.  

 donate...

As you consider your tax-deductible donations, we would be most grateful for your financial support. Please help us benefit all who need fair and equitable research allocations for their disease of interest and to achieve new organ-donor policies to reverse the organ-donor crisis in America. Indeed, we are the only nonprofit organization solely dedicated to fairness in research funding and we respectfully ask for your help in funding our effort. Remember, we have no paid employees. Indeed; we are all volunteers so every dollar of your donation will go to continuing our educating Congress and the NIH on the need for change to insure fair funding for your disease of interest. Thank you in advance for your generosity!  

Please make your donation on our secure website or mail a check made out to the FAIR Foundation at 78-629 Bougainvillea Drive, Palm Desert, CA 92211.

The FAIR Foundation; E-mail us at 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.


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