 |
 |
Global Genetic
Solutions
Nutritional Genomics
Division of Sickle Cell & Thalassemia
PRESS RELEASE
JUNE
2010
ENCODE
RESEARCHER
Dr. Ann de Wees Allen
ADDRESSES UNITED NATIONS
GENERAL ASSEMBLY
UNITED NATIONS GENERAL ASSEMBLY
JUNE
19, 2009
WORLD
SICKLE CELL CONFERENCE
UNITED NATIONS
NEW YORK
| • |
World Health Organization (WHO) |
| • |
United
Nations Children's Emergency Fund (UNICEF) |
| • |
United
Nations (UN) |
| • |
International
Organization for the Fight Against Sickle Cell Disease |
| • |
Permanent
Mission of Congo to the United Nations |
|
WORLD
SICKLE CELL CONFERENCE
|
| 1) |
An international appeal for a draft resolution for diplomatic
efforts and resolutions in global Sickle Cell Disease |
| 2) |
Identifying financial resources for Sickle Cell Disease world
wide |
| 3) |
Breakthrough Medicine in Sickle Cell Disease* |
SPEAKERS:
UNITED NATIONS GENERAL ASSEMBLY |
| • |
Representatives of the
United Nations |
| • |
First Ladies and Ministers
of Health |
| • |
*
Research Scientist: Dr. Ann de Wees Allen, L-Arginine &
Sickle Cell Disease, Encode® Research, Encode® Foundation |
16h00-16h30:
Closing of Meeting and Press Conference
17h00: Reception |
| • |
UNITED NATIONS |
| • |
WHO – World Health
Organization |
| • |
UNICEF |
| • |
UNESCO |
| • |
UNAIDS |
| • |
SCDAA (Sickle Cell
Disease Association of America) |
| • |
SCTPA (Sickle Cell &
Thalassemia Patient Network) |
| FROM: |
UNITED NATIONS HEADQUARTERS
NEW YORK, NY |
| RE: |
SPECIAL INVITATION FROM
THE U.N.
WORLD SICKLE CELL CONFERENCE
June 19, 2009 |
| TO: |
Dr. Ann de Wees Allen
ENCODE RESEARCH & FOUNDATION |
|
Dear Dr. Ann de Wees Allen,
Next
Friday, June 19, 2009, at the United Nations in New York City,
the World Health Organization, the United Nations Children’s
Emergency Fund (UNICEF), the Sickle Cell Disease Association
of America (SCDAA), the International Organization for the
Fight Against Sickle Cell Disease, and the Permanent Mission
of Congo to the United Nations, are hosting the 1st World
Sickle Cell Day Round Table Conference and Festival in
celebration of the UNITED NATIONS General Assembly's Resolution
on Sickle Cell Anameia.
We
respectfully extend an invitation to you to attend, because
you, as much as every other leading Sickle Cell researcher,
should be counted among those present for this historic event.
It
is our sincerest wish that you will be able to attend and
contribute to the framing of the Resolution's framework.
Many
leading researchers, scientists, and hematology pioneers involved
with developing the protocols for SCD diagnosis, treatment
and maintenance will be in attendance at the conference.
Respectfully,
UNITED NATIONS
Official Coordinator
World Sickle Cell Conference
|
 |
WORLD
SICKLE CELL CONFERENCE
June 19, 2009
UNITED NATIONS
NEW YORK
|
| • |
World Health Organization (WHO) |
| • |
United
Nations Children's Emergency Fund (UNICEF) |
| • |
United
Nations (UN) |
| • |
International
Organization for the Fight Against Sickle Cell Disease |
| • |
Permanent
Mission of Congo to the United Nations |
On
June 19th, 2009, the United Nations
Headquarters in New York City hosted the first World
Sickle Cell Conference, Sickle Cell Disease
Awareness Day, a global International event.
Members sponsoring and attending the event include the World
Health Organization (WHO), the United Nations Children's Emergency
Fund (UNICEF), and United Nations (UN), in collaboration with
the Sickle Cell Disease Association of America (SCDAA), the
International Organization for the Fight Against Sickle Cell
Disease, and the Permanent Mission of Congo to the United
Nations.
On 22nd December, 2008, the United Nations General
Assembly adopted Resolution A/63/L63,
recognizing Sickle Cell disease as a “public health
problem.”
Resolution A/63/L63 was initiated by SCDIO, proposed by the
Delegation of the Republic of Congo Brazzaville and co-sponsored
by 24 Member States.
|
| • |
Leading Scientific Experts |
| • |
Panels of Discussion
and Round Table |
| • |
First Ladies Meeting |
| • |
Gala Dinner |
| 19th June 2009 - United Nations
Headquarters in New York |
MAIN
TOPIC: Almost a century since the discovery of sickle
cell disease: review and perspectives. Video report on Sickle
Cell Anaemia, Complete report on progress made, obstacles
to universal access to prevention, treatment, care, information
and education. |
| • |
Subtheme
2: Correlation between the disease and other health priorities
such as malaria and HIV/AIDS and malnutrition |
| • |
Subtheme 3: How to decrease disparities between North and
South in the treatment of sickle cell disease: Solutions for
countries strongly affected by the disease |
| • |
Subtheme
4: Effective strategies of fight: role of the sickle cell
dedicated centers and research |
| • |
Subtheme 5: Effective strategies for resources mobilization
and financing programs. Case of the United Nations’
System Awareness through sport and culture. |
| • |
Sickle Cell
Presentations NGOs (SCDAA/SCTPN) |
| • |
Scientists from
the SCDIO |
Monday 15th to Friday
19th June 2009:
Art Exhibition on sickle cell disease |
June 18, 2009:
Press conference at the United Nations headquarters |
Friday, 19 June 2009:
9 AM to 9:45 AM:
Opening Ceremony |
| • |
09h45-10h15:
Visit of the exhibition stands |
| • |
10h15-12h45:
Communications by scientific experts followed by discussions |
| • |
12h45-13h15:
Presentation of the conclusions of the panel and closing ceremony. |
| • |
13h15-14h30:
Lunch |
| • |
15h00-16h30:
Round Table Meeting of First Ladies and Royal Highnesses |
| • |
18h00-21h00:
Gala Dinner |
|
On December 22, 2008, the General Assembly
of the United Nations unanimously adopted Resolution A/63/L63
recognizing sickle cell disease as a public health problem.
Among
the objectives envisaged by this resolution, proposed by the
delegation of the Congo in collaboration with OILD and 24
Member States was the recognition that June 19 of each year
be designated Sickle Cell Day to increase awareness of this
problem at national and international levels.
To
recognize this event, the permanent mission of the Congo to
the United Nations in New York in collaboration with OLID
(l’Organisation Internationale de Lutte contre la Drépanocytose)
will organize in partnership with the World Health Organization
(WHO), the United Nations Children’s Fund (UNICEF),
and the World Bank, the first Sickle Cell Awareness Day to
take place at the United Nations on June 19, 2009.
|
| • |
To
sensitize member States and the international community to
the objectives of resolution A/63/L63. |
| • |
To
mobilize the resources necessary to create centres of excellence
for treatment and research in the disease in Africa and India. |
| • |
Exhibition
of Associations and international organizations at the United
Nations building |
| • |
Art exhibition on sickle cell disease |
| • |
Festival
organized by the Sickle Cell & Thalassemia Patients Network
(NSTPN) in areas around the United Nations |
| • |
Discussion
panels and round tables |
| • |
Round table of the First Ladies and Heads of State |
| • |
Reception |
| 08h30
– 08h45 |
Registration |
| 09h00-
09h10 |
Opening:
Secretary General of the United Nations |
| 09h10-
09h20 |
Address
by the President of the General Assembly of the United Nations |
| 09h20-09h30
|
Addresses
by representatives of WHO/UNICEF |
| 09h30-09h40
|
Address
by the President of OILD |
| 09H40-09h50
|
Address
by the First Lady of the Congo |
| 09h50-10h00
|
Address
by the Head of State |
| 10h00-10h15
|
Experience
of patients and their families |
| 10H15-10h30
|
Tour
of exhibition and coffee break |
|
A century since the discovery of
sickle cell disease: review and perspectives. General presentation
on sickle cell disease: recent discoveries.
10h30-10h50
Sub-topic 1: Progress achieved: obstacles to universal access
to prevention, treatment, care, information and education;
the developed world and Africa:
Professor Jacques ELION (France), Professor Jean
KOKO (Gabon)
10h50-11h10
Sub-topic 2: The perspective of sickle cell disease in relation
to other public health priorities such as malaria, HIV/Aids
and malnutrition:
Professor Dappa Diallo (Mali), Professor Padreep
Patra (India); representing UN/Aids*
11h10-11h30
Sub-topic 3: Reducing the disparities between North and South
in the treatment of sickle cell disease: What solutions are
available in wealthy countries?
Professor Pierre Bégué (France),
Professor Aderson Araujo (Brésil)
11h30-11h50
Sub-topic 4: Strategies for prevention : Role of Reference
Centres and research
Professor Graham SERJEANT (Jamaica), Professor
Ohéné FREMPONG (USA)
11h50-12h10
Sub-topic 5: Strategies to mobilise resources and financial
support
| • |
Opportunities
through the United Nations |
| • |
Increasing awareness
through sport and culture. |
Professor
Elira Dokékias; Representatives of the United Nations,
Goodwill ambassadors for sickle cell ; FIFA*
12h10-12h30
Discussions
12h30-14h00 Lunch break
14h00-16h-00
|
Moderators: Doctor Léon
Tshilolo ( Congo RDC)
Teresa Ginger Davis (USA) |
| 1) |
Preventing
spread of the sickle cell gene around the world |
| 2) |
Summarising
the best practice for management of the disease |
| 3) |
Improving transfusion services for sickle cell patients |
Speakers:
Professor Ohéné Frempong, Professor Elira Dokékias,
Professor Graham Serjeant, Doctor Elena Ginzburg |
| 14h00-16h00
Round Table 2:
UNITED NATIONS GENERAL ASSEMBLY
Moderators
: Professor Ibrahima Diagne (Sénégal),
Joice Aragao de Jesus (Brésil) |
| 4) |
An international appeal for a draft resolution to supplement
diplomatic efforts for further resolutions |
| 5) |
Identifying financial resources for sickle cell disease world
wide |
| 6) |
Breakthrough Medicine in Sickle Cell Disease* |
SPEAKERS:
UNITED NATIONS GENERAL ASSEMBLY |
| • |
Representatives of the
United Nations |
| • |
First Ladies and Ministers
of Health |
| • |
*
Research Scientist: Dr. Ann de Wees Allen, L-Arginine &
Sickle Cell Disease, Encode® Research, Encode® Foundation |
| 16h00-16h30:
Closing of Meeting and Press Conference
17h00: Reception
|
| • |
UNITED NATIONS |
| • |
WHO – World Health
Organization |
| • |
UNICEF |
| • |
UNESCO |
| • |
UNAIDS |
| • |
SCDAA (Sickle Cell
Disease Association of America) |
| • |
SCTPA (Sickle Cell &
Thalassemia Patient Network) |
|
Global Genetic
Solutions
Nutritional Genomics
Division of Sickle Cell & Thalassemia
Donation of
Encode®
Patents & Research
|
| TO: |
UNITED NATIONS, NEW
YORK, NY |
| FROM: |
ENCODE®
RESEARCH & ENCODE® FOUNDATION |
| DATE: |
FEBRUARY 17, 2010 |
| RE: |
DONATION OF PATENTS/RESEARCH TO UNITED
NATIONS
|
|
Dear
Sirs;
Per special invitation by the United Nations, Encode®
Chief Researcher, Dr. Ann de Wees Allen, became the first
scientist ever to speak at the United Nations General Assembly
on the topic of L-Arginine and Sickle Cell.
On June 19th, 2009, the United Nations in New York City hosted
the first World Sickle Cell Conference, Sickle Cell Disease
Awareness Day, a global International event.
The event was attended by the World Health Organization
(WHO), the United Nations Children's Emergency Fund (UNICEF),
and United Nations (UN), in collaboration with the
Sickle Cell Disease Association of America (SCDAA),
the International Organization for the Fight Against Sickle
Cell Disease, and the Permanent Mission of Congo
to the United Nations.
On behalf of Encode® Research and Encode® Foundation,
we would like to confirm our donations to the United Nations,
including the Pro Bono licensing of our Sickle Cell Patents
and technology.
We presented this donation
at the United Nations General Assembly at the First Sickle
Cell Disease World Day in June 2009 in New York. During Dr.
Ann de Wees Allen’s address to the United Nations on
June 19, 2009, our foundation donation included the following
organizations:
|
| • |
World Health Organization
(WHO) |
| • |
United Nations Children's
Emergency Fund (UNICEF) |
| • |
United Nations (UN) |
| • |
International Organization for the Fight Against Sickle Cell
Disease |
| • |
Permanent Mission of
Congo to the United Nations |
Our
research of the past 25 years encompass the utilization of
L-Arginine attached to a Blind Amino Acid Rider(1), which
renders L-Arginine safe for use long-term in humans. L-Arginine
is the nitrogen donor for synthesis of nitric oxide, a potent
vasodilator that is deficient during times of Sickle Cell
crisis. |
| • |
Children's
Hospital & Research Center(2) published a trial showing
that “A dysregulation of arginine metabolism
contributes to endothelial dysfunction and pulmonary hypertension
(PH) in SCD, and is strongly associated with prospective patient
mortality.” |
| • |
The
journal of the American Medical Association (JAMA) reported
the association between L-Arginine and Sickle Cell disease:
Dysregulated Arginine Metabolism, Hemolysis-Associated
Pulmonary Hypertension, and Mortality in Sickle Cell Disease. |
| • |
Researchers
at the Children's Hospital and Research Center at
Oakland and the University of California at San Francisco
reported that the amino acid L-arginine can offer a "promising
new therapy" for Sickle Cell disease:
National Institute of Health grants HL-04386–02 and
RR01271–19
Pediatric Clinical Research Center, and GM57384 (to S.M.M.).
Am. Journal of Respiratory and Critical Care Medicine, Vol
168. pp. 63-69 |
|
Additional REFERENCES are attached below.
It
is our intent to freely provide the use of our Genetic Polymorphism
Patents and technology to organizations worldwide who seek
to help alleviate and mitigate the effects of Sickle Cell
disease in children and adults.
Sincerely,
Global Health Initiative
Encode® Research & Encode® Foundation
wwwEncodeResearch.com
DNA@EncodeResearch.com
|
ADDENDUM: REFERENCES
FEBRUARY 17, 2010 |
| FROM:
|
ENCODE®
RESEARCH & ENCODE® FOUNDATION |
| DATE: |
FEBRUARY 17, 2010 |
| RE: |
DONATION
OF PATENTS/RESEARCH TO UNITED NATIONS |
| (1)
The Norwegian Sickle Cell Anaemia Organization |
| • |
Dr.
Ann de Wees Allen named “World’s Leading L-Arginine
Researcher” |
| • |
Recent
Research Highlights the Importance of Nitric Oxide |
| • |
Dr. Ann de Wees Allen’s Encode Research Team Discovers
Sickle Cell Treatment |
| (2)
Current Molecular Medicine: 2008 Nov;8(7):620-32 |
Nitric
oxide and arginine dysregulation: a novel pathway to pulmonary
hypertension in hemolytic disorders.
Children's Hospital & Research Center Oakland, Oakland,
CA 94609, USA.
Secondary pulmonary hypertension (PH) is emerging as one of
the leading causes of mortality and morbidity in patients
with hemolytic anemias such as sickle cell disease (SCD) and
thalassemia.
Impaired nitric oxide (NO) bioavailability represents the
central feature of endothelial dysfunction, and is a major
factor in the pathophysiology of PH.
Inactivation of NO correlates with hemolytic rate and is associated
with the erythrocyte release of cell-free hemoglobin, which
consumes NO directly, and the simultaneous release of the
arginine-metabolizing enzyme arginase, which limits bioavailability
of the NO synthase substrate arginine during the process of
intravascular hemolysis.
Rapid consumption of NO is accelerated by oxygen radicals
that exists in both SCD and thalassemia. A dysregulation of
arginine metabolism contributes to endothelial dysfunction
and pulmonary hypertension (PH) in SCD, and is strongly associated
with prospective patient mortality.
The central mechanism responsible for this metabolic disorder
is enhanced arginine turnover, occurring secondary to enhanced
plasma arginase activity. This is consistent with a growing
appreciation of the role of excessive arginase activity in
human diseases, including asthma and pulmonary arterial hypertension.
New treatments aimed at improving arginine and NO bioavailability
through arginase inhibition, suppression of hemolytic rate,
oral arginine supplementation, or use of NO donors represent
potential therapeutic strategies for this common pulmonary
complication of hemolytic disorders.
|
L-ARGININE/SICKLE
CELL
JOURNAL REFERENCES |
|
C.
R. Morris, G. J. Kato, M. Poljakovic, X. Wang, W. C. Blackwelder,
V. Sachdev, S. L. Hazen, E. P. Vichinsky, S. M. Morris Jr,
and M. T. Gladwin
Dysregulated Arginine Metabolism, Hemolysis-Associated
Pulmonary Hypertension, and Mortality in Sickle Cell Disease
JAMA, July 6, 2005; 294(1): 81 - 90. |
|
Journal
of the American Medical Association (JAMA)
G. J. Kato and M. T. Gladwin
Evolution of Novel Small-Molecule Therapeutics Targeting
Sickle Cell Vasculopathy
JAMA, December 10, 2008; 300(22): 2638 - 2646. |
|
D.
K. Kaul, X. Zhang, T. Dasgupta, and M. E. Fabry
Arginine therapy of transgenic-knockout sickle mice
improves microvascular function by reducing non-nitric oxide
vasodilators, hemolysis, and oxidative stress
Am J Physiol Heart Circ Physiol, July 1, 2008; 295(1): H39
- H47. |
|
C.
L. Donadee and M. T. Gladwin
Hemodialysis hyperhemolysis a novel mechanism of endothelial
dysfunction and cardiovascular risk? J. Am. Coll.
Cardiol., February 2, 2010; 55(5): 460 - 462. |
|
K.
I. Ataga
Hypercoagulability and thrombotic complications in
hemolytic anemias
Haematologica, November 1, 2009; 94(11): 1481 - 1484. |
|
K. I. Ataga
Novel therapies in sickle cell disease
Hematology, January 1, 2009; 2009(1): 54 - 61. |
|
G.
J. Kato and M. T. Gladwin
Evolution of Novel Small-Molecule Therapeutics Targeting
Sickle Cell Vasculopathy
JAMA, December 10, 2008; 300(22): 2638 - 2646. |
|
G. Butrous,
H. A. Ghofrani, and F. Grimminger
Pulmonary Vascular Disease in the Developing World
Circulation, October 21, 2008; 118(17): 1758 - 1766.
|
|
M.
L. Krajewski, L. L. Hsu, and M. T. Gladwin
The proverbial chicken or the egg? Dissection of the
role of cell-free hemoglobin versus reactive oxygen species
in sickle cell pathophysiology
Am J Physiol Heart Circ Physiol, July 1, 2008; 295(1): H4
- H7. |
|
J.
Belik, D. Shehnaz, J. Pan, and H. Grasemann
Developmental changes in arginase expression and activity
in the lung
Am J Physiol Lung Cell Mol Physiol, March 1, 2008; 294(3):
L498 - L504. |
|
G.
J. Kato
Novel Small Molecule Therapeutics for Sickle Cell
Disease: Nitric Oxide, Carbon Monoxide, Nitrite, and Apolipoprotein
A-I
Hematology, January 1, 2008; 2008(1): 186 - 192. |
|
T.
W. Yeo et al.
Impaired nitric oxide bioavailability and L-arginine
reversible endothelial dysfunction in adults with falciparum
malaria
J. Exp. Med., October 29, 2007; 204(11): 2693 - 2704. |
|
C.
R. Morris, E. P. Vichinsky, G. J. Kato, M. T. Gladwin, S.
Hazen, and S. M. Morris Jr
Arginine Metabolism, Pulmonary Hypertension, and Sickle
Cell Disease JAMA, November 16, 2005; 294(19): 2433
- 2434. |
|
 |
“So
many children suffer with global diseases,
such as Sickle Cell and Thalassemia*
– it is for them that we strive to find solutions
hidden within the DNA” |
| • |
Global
Health Solutions |
| • |
Harnessing
the power of Nutritional Genomics |
| • |
Metholologies
addressing and ameliorating global genetic variants |
| • |
Harvesting
the fruits of the Human Genome Project by optimizing human
health |
| • |
Genetic
Polymorphisms |
| • |
Sickle
Cell |
| • |
Thalassemia |
There
are an estimated 60-80 million people in the world who carry
the Beta Thalassemia trait alone.
This is a very rough estimate and the actual number of thalassemia
Major patients is unknown due to the prevalence of thalassemia
in Asia where genetic screening resources are limited.
Countries such as India, Pakistan and Iran are seeing a large
increase of thalassemia patients due to lack of genetic counseling
and screening.
There is growing concern that thalassemia may become a very
serious problem in the next 50 years, one that will burden
the world's blood bank supplies and the health system in general.
|
|
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