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FAIR NEWSLETTER
AIDS Advocate: "You Should Not Have
a Platform To Speak"
AIDS Advocate Jules Levin spoke these words to FAIR Foundation
President & CEO, Dr. Darling and the audience at the California Hepatitis C
Task Force's 3rd Annual Conference in San Jose.
Dr. Darling had completed his speech and had joined an
on-stage panel discussing hepatitis C research issues with the
President & CEO of The American Liver Foundation, Alan
Brownstein, and the discover of the hepatitis C virus, Michael
Houghton of Chiron Corporation. Mr. Levin's comments that Dr.
Darling should not be allowed to speak were strongly rebutted by Denise
Cannistraci, Executive Director of Nirvana Drug & Alcohol
Institute and also by Mr. Brownstein. Click
here to watch remarkable video of Mr. Levin, Ms. Cannistraci,
Mr. Brownstein and Dr. Darling's response with added
information regarding the FAIR Foundation, co-infected
patients, The FAIR Foundation's support from and for the gay
community.
"You Have Every Right to Speak"
That quote is from many members of the national organization
of Vietnam Veterans, ViętNow, who expressed their support of Dr. Darling's
right to speak regarding funding disparities when he was at
ViętNow's 19th Annual Convention in Rockford, Illinois.
Indeed, they stated it was a right that they and their
brothers had died to insure. Dr. Darling had been invited and
gave The FAIR Foundation presentation to a large and receptive
crowd. Dr. Darling states, "I was extremely honored to be with
these Vietnam Vets and to experience an emotional weekend with
them." You will be greatly enriched by taking a moment to visit with and
view pictures of
these highly respected veterans and their children
here
No FAIR Presentation Allowed this June at
Hepatitis Movement for Awareness March on DC
After two years of presenting at the Hepatitis Movement for Awareness
(HMA) March on DC
for The FAIR Foundation, Dr. Darling has been notified that he
will not be allowed to give his FAIR Foundation speech this
year. The reasons cited were fear that AIDS activists
would become upset again and that the Founder of HMA, Tricia Lupole, does not agree with The FAIR
Foundation's suggested solution to the disparities in NIH funding. To view last year's disruption by AIDS
activists during Dr. Darling's speech, click
here.
What
IS Dr. Darling's
Presentation?
Dr. Darling's presentation consists of the
John Stossel Video from 20/20 entitled "Disease Politics" (ABC
Network authorization obtained for non-commercial use) and a
PowerPoint presentation that summarizes the disparities in
funding. The presentation is professional and factual. We
encourage you to view the 13 minute Stossel Video
here (high speed Internet connection
required) and the slide show
here (PowerPoint software required for slide show-please allow 30 seconds
for it to load).
Become a FAIR Advocate with a Click:
With a simple click
here, then a copy and paste, you can easily convey your displeasure with present
NIH spending on your disease and send a prepared letter to President Bush and
your Congresspersons. Don't hesitate; do it today!
Focus Disease:
ALS
(Amyotrophic Lateral Sclerosis Disease)
-
ALS is commonly known as Lou
Gehrig's Disease, is a progressive neurodegenerative disease
that attacks motor neurons in the brain and spinal cord.
-
ALS is serious: There is
no cure. Motor neurons control the movement of voluntary
muscles. When the motor neurons can no longer send impulses to the
muscles due to ALS, the muscles begin to waste away (atrophy),
causing increased muscle weakness. Motor neuron, or nerve cell,
death makes it impossible for the brain to control muscles or
signal them to move.
-
50% of ALS
patients die within 18 months of diagnosis
-
80% of ALS
patients die within 5 years of diagnosis
-
ALS causes great suffering: Symptoms
of ALS include twitching and cramping of muscles (called
fasciculation), loss of motor control in hands and arms, impaired
use of the arms and legs, weakness and fatigue, tripping and
falling, dropping things, slurred or thick speech and difficulty
breathing or swallowing.
-
ALS is common: The incidence of ALS is five
times higher than Huntington's disease and about equal to multiple
sclerosis. 8,000 new cases are diagnosed each year.
-
ALS, gender and race: ALS has no
prejudice — it occurs worldwide, with no age, ethnic or economic
boundaries.
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Fairness? The NIH is spending only
$42 million dollars on ALS Disease in research
in 2005 versus
$2.9 Billion for HIV/AIDS
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ALS and all other diseases except HIV/AIDS
would receive larger research allocations under the FAIR
Foundation's policies.
Facts and statistics from the
ALS Therapy
Development Foundation and the
ALS Survival Guide.
Please help us in our efforts to gain fair and
equitable NIH distributions for ALS and ALL diseases by joining
free
HERE. Member sign-up information is confidential.
In addition, please forward this Newsletter on to your
associates and friends.
The FAIR Foundation
78629 Bougainvillea Drive,
Palm Desert, CA 92211
E-mail:
FAIR@dc.rr.com
FAIR Mission Statement:
The FAIR Foundation is
dedicated to fair and equitable distribution of
research funds by the NIH 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.
FAIR is an acronym for Fair Allocations In
Research. FAIR is fair.
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