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.

"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."

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.
 

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.