September is National Sickle Cell Awareness Month. Because it is "back to school" month for most children, the Sickle Cell Disease Association of America wants the public to reflect on the children and the adults whose lives, education and careers have been affected by this disease. The observance originated in 1975 when the Association and its Member Organizations began conducting month long events to call attention to sickle cell disease and the need to address the problem at national and local levels.
The Association and its Member Organizations sponsored public educational programs and fund raising activities during the month. State and local government officials issue Sickle Cell Month proclamations and are introduced to local poster children.
The tradition of selecting a National Poster Child from local candidates began in 1976 with President Gerald Ford greeting the first winner at the White House. Presidents' Carter, Reagan, Bush and Clinton have also greeted the National Poster Child.
The effort to have Sickle Cell Month officially recognized at all levels succeeded in 1983 when the House of Representatives unanimously passed the resolution, introduced by the Congressional Black Caucus, asking President Reagan to designate September as "National Sickle Cell Anemia Awareness Month." The President signed the resolution in August of 1983.
For educational materials to display during Sickle Cell Awareness Month call (800) 421-8453 or e-mail your request to scdaa@sicklecelldisease.org. For information on activities sponsored by your local SCDAA Member Organization.
BE A DONOR!
Blood is needed for emergencies and for people who have cancer, blood disorders, sickle cell, anemia and other illnesses. Some people need regular blood transfusions to live.
 | You will get free juice and cookies. |
 | You will weigh less — one pint less when you leave than when you came in. |
 | It's easy and convenient — it only takes about an hour and you can make the donation at a donor center, or at one of the many Red Cross mobile blood drives. |
 | It's something you can spare — most people have blood to spare... yet, there is still not enough to go around. |
 | Nobody can ask you to do any heavy lifting as long as you have the bandage on. You can wear it for as long as you like. It's your badge of honor. |
 | You will walk a little taller afterwards — you will feel good about yourself. |
 | You will be helping to ensure that blood is there when you or someone close to you may need it. Most people don't think they'll ever need blood, but many do. |
 | It's something you can do on equal footing with the rich and famous — blood is something money can't buy. Only something one person can give to another. |
 | You will be someone's hero — you may give a newborn, a child, a mother or a father, a brother, or a sister another chance at life. In fact, you may help save up to three lives with just one donation. |
 | It's the right thing to do. |
1. The American Red Cross
2. The American Association of Blood Banks
3. New York Blood Center
4. Gulf Coast Regional Boold Center
3 comments:
NICOSAN for the Treatment of Sickle Cell Disease
There is a relatively new treatment for sickle cell being produced in Nigeria by an American company called NICOSAN®, it’s proprietary name is NIPRISAN® . It was developed on the premise of traditional Nigerian plant based medicinal practices for the treatment of sickle cell disease. It has been tested through phase IIb clinical trials and found to be highly efficacious. Phase III trials have yet to be completed however it was approved for sale in Nigeria based on phase IIb trials and toxicity studies which showed it to be safe and non-toxic.
Double-blind, placebo-controlled, randomised cross-over clinical trial of NIPRISAN® in patients with Sickle Cell Disorder
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7GVW-4DS346T-1S&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=211981d545303693affebb8c012d2cac
Efficacy of Niprisan in the prophylactic management of patients with sickle cell disease
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VS8-43DFJCH-G&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=10528ecbab3ec7e977301fb9f2688ef6
NIPRISAN — Nix-0699 Toxicity Studies
http://www.biospace.com/news_story.aspx?StoryID=15890720&full=1
Niprisan (Nix-0699) improves the survival rates of
transgenic sickle cell mice under acute severe hypoxic conditions
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1365-2141.2003.04536.x?journalCode=bjh
NIPRISAN Case, Nigeria
A Report for GenBenefit (2007)
http://www.theparliament.com/NR/rdonlyres/F46A1A12-0A1A-41DA-9F5D-A11486CA9BFA/0/Nigerian_Case.pdf
This drug is a major advancement in the treatment of sickle cell disease unfortunately it is not available in the U.S.. Although the compound has been granted orphan drug status by the FDA and the regulatory body of the European Union, to date investigational drug applications for the approval
process have yet to be submitted. Getting a drug approved in either area is extremely expensive. Until there is funding available to proceed with the FDA and EU applications it will be difficult for non-Nigerians to obtain the drug.
I do say difficult but it is not impossible. If you have a hematologist or hemoncologist who is willing to put fourth the effort there are special dispensations available through the FDA for the importation of unapproved drugs on a compassionate use basis.
“Expanded access program (EAP). EAPs are typically designed to provide widespread access to a drug that has proven efficacy in clinical trials but is still awaiting FDA approval. They’re similar to standard clinical trials with a specific treatment plan and certain FDA requirements, but they have looser patient eligibility criteria. More than 23,000 U.S. cancer patients enrolled in an EAP for Iressa
before it was FDA-approved, for example.”
“Single patient use. This program offers an experimental drug to an individual patient, rather than a group. The FDA approves these uses on a case-by-case basis. Decisions are based on other treatments already available and information
about the drug’s efficacy and potential toxicities.”
http://www.curetoday.com/backissues/v3n3/departments/specialreport/index.html
To date I have no knowledge that anyone has sought any single use or expanded access from the FDA for Nicosan. Unfortunately regardless of the dissemination of this information thus far no one has put forth the effort to obtain the drug for use.
If just one person would start the ball rolling with a
caring and concerned medical practitioner it could open up the drug for wide spread use by tens of thousands of patients across the U.S. Unfortunately thus far the general response I receive is that people don’t believe that their physician would be interested in going to this sort of effort nor do they themselves seem to be inclined to seek the use of a treatment that could potentially end their crises.
There has to be at least one physician out there who has enough care and concern for his patients to be willing to put forth the effort necessary to obtain this medication legally. I urge anyone who is effected by sickle cell to approach their physicians with this information and attempt to obtain this treatment not only for themselves but for all patients who could potentially benefit from it’s use.
We already know the benefits of the treatments available in the U.S. and the E.U.. In many cases they are only marginally effective or in the case of hydroxyurea cause side effects so serious that many choose not to use it as treatment.
Here we have an opportunity to use a treatment that has been shown to be highly effective, eradicating crises in the majority of patients and reducing crises by 50% in the most refractory cases.
Although the clinical trial group was what the casual reader might interpret as quite small it is common for drugs which fall into the orphan drug category to use small sample groups. Many orphan drugs have been approved based on very small phase II and phase IIb clinical trials in the U.S. In the case of FDA fast track status, a drug may be
approved during phase II trials if the drug shows
significant advantage over current approved therapies for life threatening illness.
Fast Track Designation is a program that, if granted, is designed to facilitate the development and expedite the review of new drugs, thereby allowing the FDA to approve drugs used to treat a serious condition or a life-threatening disease with less safety data following the conclusion of phase II studies, rather than phase III, the normal practice.
The main criterion for a Fast Track Designated drug is the potential to treat a life-threatening illness or fill a major unmet medical need. Fast Track may be submitted with the IND or at any time during the clinical development of the drug. The Fast Track designation may allow a company’s application to follow Priority Review, Standard Review, or a Rolling Review of the application.
http://www.fda.gov/CbER/gdlns/fsttrk.pdf
Nicosan by Western standards is an extremely inexpensive drug. It is available in Nigeria without prescription at $23/month for adults and child doses at $18/month. Here is a link to the company and product website.
http://xechemnigeria.com/products.htm
I sincerely hope that you find this information helpful. I would encourage you to to forward and post this information to any person, blog or website where persons effected by sickle cell anemia can have access to this information.
Feel free to write me with any questions you may have.
NicosanForSickleCell@yahoo.com
United Nations Economic Commission For Africa
Book Of Abstracts
Science With Africa Conference
March 3-7, 2008
page 30
Evaluation of Niprisan (Herbal Medicine) for the Management of Sickle Cell
Anaemia
Charles Wambebe and Hadiza Khamofu, International Biomedical Research in Africa, Abuja,
Nigeria, wambebe@yahoo.com, Joseph Okogun, Nathan Nasipuri and Karynius Gamaniel,
National Institute for Pharmaceutical Research and Development, Abuja, Nigeria.
About 70% of all sickle cell anemia (SCA) subjects reside in Africa, estimated at over 12 million. The prevalence of SCA is estimated at over 2% while infant mortality is about 8% and survival rate of SCA babies in rural areas by five years of age is about 20%. These statistics indicate that SCA is probably the most neglected (and sometimes forgotten by health authorities) serious public health disorder with serious mortality and morbidity rates in Africa. The objective was to undertake pre-clinical and clinical assessments of a herbal extract vis-à-vis management of sickle cell anemia using Good Laboratory Practice and Good Clinical Practice principles respectively. In Africa, there is no standard treatment for sickle cell anemia, only palliative management is generally available. In view of this situation, most
SCA subjects use herbal medicines. NIPRISAN is a standardized extract from four medicinal/food plants: Piper guineenses seeds, Pterocarpus osun stem, Eugenia caryophyllum fruit and Sorghum bicolor leaves. Short term toxicity study indicated that NIPRISAN was safe in laboratory animals. Bio-activity guided fractionation show that vanillin and aromatic aldehydes may be the bioactive moieties. NIPRISAN reversed sickled red blood cells and
protected them from being sickled when exposed to low oxygen tension. NIPRISAN dose- dependently delayed polymer formation of haemoglobin S. NIPRISAN induced 85% increased solubility of deoxy haemoglobin S. The in vivo efficacy study was undertaken at Children Hospital of Philadelphia, USA. Histological examination of lungs of control Tg transgenic mice carrying human sickle haemoglobin showed entrapment of massive numbers
of sickled cells in alveolar capillaries. NIPRISAN significantly cleared the lungs of sickled cells. Furthermore, NIPRISAN induced profound effect on the survival time of Tg mice under hypoxic conditions (p<0.0001). The phase II clinical data indicated that all the subjects benefited from NIPRISAN with no serious adverse effect. About 80% of the subjects did not experience any crisis during the study (12 months). The subjects experienced significant
reduction in hospital admission while attendance at school profoundly increased. Furthermore, there was no evidence of kidney or liver damage. NIPRISAN has been patented, licensed to an American company, registered and being manufactured at Abuja for
global market.
http://www.uneca.org/sciencewithafrica/content/swa_book_of_abstacts-en.pdf
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