World Sickle Cell Day

Awareness and action will change a curative into a cure!

World Sickle Cell Day  2013 ~ Global Activities

AFRICIA

Nigeria 

SICKLE CELL FOUNDATION NIGERIA (SCFN)

www.sicklecellfoundation.com

The SCFN has, arguably, the most comprehensive Sickle Cell Centre in Africa. With donor support, we supervise, in 4 Nigerian States, the running of 6 Sickle Cell Clinics involving a free supply of drugs, some materials and some equipment. More States will be added when financial provision permits. Already, these dedicated clinics have positively impacted the longevity and quality of lives of patients.  Other routine services include an e-library on SCD (membership available); genetic counseling; patient and community education; TCD scanning of children to determine risk of stroke; laboratory diagnosis; leg ulcer treatment; chorionic villus sampling (CVS) for prenatal diagnosis (PND). Access to PND is limited by the cost of having to send samples to England for DNA diagnosis. Our DNA laboratory requires some equipment and materials to enable it attain world standard, complete PND locally and thus improve access to the service.

We also run training courses on Genetic Counseling, Update Seminars for doctors and nurses; Practical training on TCD scanning and on CVS under ultrasound guidance. We invite collaboration on research and office space and accommodation are available for visiting researchers. Our immediate needs are

1. 1 Apheresis machine

2. For DNA analysis

2. 1 Thermocycler (0.2ml tube)

2.2 Nano drop Spectrophotometer

2.3 GeneMapper ®  ID-X v1.2 Software, Full Version for 3500 Genetic analyser

2.4 Gel Tank and Power Pack

Contact: Annette Akinsete    annettea@sicklecellfoundation.com       

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Sudan

24th of June

Our day will consist of 2 lectures about SCA, galllery about the disease and sudanese patients and the clinic,financial donation,blood donations,free medications. Also we will contact tv to make an episode about SCA in its medical programme and press.

 

 

 

 

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 Tanzania  - World Sickle Cell Day Education

 

http://www.ippmedia.com/frontend/index.php?l=56137

Sickle cell disease been ranked the biggest killer disease among children under the age of five after malaria, hence the need for the government and stakeholders to put in more efforts to fight it. Over 90 percent of Africans are the most sufferers of the disease followed by Asians and those loving in the Mediterranean area. 

This was revealed yesterday in Dar es Salaam by the Sickle Cell Foundation of Tanzania (SCFT) Chairperson, Grace Rubambey at the World Sickle Cell Day initiated by the World Health Organization (WHO) and celebrated on June 19 annually.

Rubambey said Tanzania ranks fouth in the world, with the highest number of sickle cell disease births a year (up to 11,000), after Nigeria, India and DR Congo, adding that if untreated, up to 90 percent of children may die in childhood. She said Tanzania and Africa in general is in a position of having high rates of the disease due to poverty, as patients need good services like clean water and medical treatment which are still challenges in many countries on the continent.

“Early diagnosis of sickle cell in newborns as well as comprehensive care can effectively improve the situation and reduce mortality rate by 70 percent in some countries,” she noted. She said that low understanding of the disease has been identified as the biggest challenge among Tanzanians as there is a misleading notion that associates sickle cell with HIV/Aids hence leaving many scared of attending clinics.  

However, CSFT launched a campaign on sickle cell called “Cycle for Sickle Cell” which began in October 2012 and turned out successful as it helped raise awareness. 

For his part, sickle cell department coordinator from the Muhimbili National Hospital (MNH), Deogratius Soka said USD2m equivalent to 3bn/- is required to start building a structure for the disease’s centre. He however said as of now awareness among the public has increased whereby the number of patients attending has increased from 800 in 2004 to 4,000 this year.

He said since MNH already has a department dealing with sickle cell, they now focus on reaching other hospitals which don’t have the section by supporting them with experts and facilities.  He added that Tanzania intends to introduce screening for newborns and strengthen sickle cell services in health facilities at all levels.

Soka noted that there are advances in medicine and improved knowledge on the management of sickle cell that can be implemented in Tanzania to reduce mortality and improve the quality of life of people with the disease.

Meanwhile, Kenya Commercial Bank (KCB) branch manager Philipo Pilla said the foundation needs more support from various institutions so that it reaches more people. 

He added that several people are suffering but know nothing about the disease, thus more education is needed to increase awareness.

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Zambia

Zambian Childhood Cancer and Blood Disorders Foundation

We were planning on awareness campaigns in schools, clinics. We have not really advanced under the Theme. Know Your Sickle Cell Stauce.

INDIA

Calicut, Kerala,

19th June, world Sickle cell disease Day

Theme: Know your Sickle Cell status

14th June, World blood Donor Day

Them: Every blood donation is a gift of life

 

Blood Patients Protection Council (BPPC) has decided to start world sickle Cell disease day program on 15th June Saturday at 10am at Regional Science Centre& planetarium, Calicut, Kerala, India.  In this part various program like awareness campaign, brochure release, free Hepatitis vaccination to those who are suffering  from blood disorder ailments like sickle cell anemia, Thalassemia, hemophilia and leukemia will be organized. Eminent blood donors and the dedicated workers in the field of blood donation will be honored in the program.

Dr.T.N.Seema, Member of Indian parliament, who released 75 Lakh rupees recently from her development fund for the development of hemeto-oncology department of MCH Kozhikkode, will inaugurate the function. Adv.K.E.Gangadaran,Hon’ble member, Kerala state Human Right Commission, he who recommended for the free life saving drugs and centralized treatment centre for blood disorder patients like Sickle cell anemia, Thalassemia,Hemophilia and Leukemia will perform the key note address. K.C.Abu, president, district committee of Indian National Congress, the ruling party of India, Dr.P.M.Kutty, president, Malabar THAS  society, Dr.V.P.Sasidharan, Head, department of Transfusion medicine, Dr.V.T.Ajithkumar, chief physician in pediatric Hemeto-oncology clinic,MCH.Kozhikkode, Sri.V.S.Ramachandran, director, Regional Science centre & planetarium will address in the program. For more details contact, Kareem Karassery, Gen.Convener,Blood Patients Protection Council.Mob.9447019182

 

 

U.S.A.

California

Los Angeles

 

A SoCal SPECIAL THANK YOU TO 

VENUE HOST:

2nd AME Church, 5500 South Hoover, Los Angeles CA 90037

Rev. John Edward Cager III Senior Pastor and Iberia Nelson, Church Sect.

 


2013 WSCD TEAM:
Sharon, Odell, Iris, Jay, and Vanessa




SUPPORT TEAM:

Dawn, Lanett (Spanish Translation), Liz of Focus LA, Candice, and Kenny!



SOUNDING BOARD SUPPORTERS:

Tory, Johnnye, Edward, Dana, Debra and Brianna!


LIFE SAVERS:
Marc, Demark Computer Services IT Services & Computer Repair
15118 Crenshaw Blvd

Gardena‎ CA‎ 90249

310.800.4498

Kandee Lewis, Executive Director/Owner of The Positive Results Corporation and

Business Solution Consulting Service

323.787.9252

kandeele@aol.com

Deep Scrub Bathtub Regaling and Carpet Cleaning Specialist

323.392.5994

Hicks Trophy and Engraving Co.,

4502 S. Western Ave, Los Angeles, CA

323 -299-6260.

KiKi  Shepard and The K.I.S. Foundation, Inc.

13351-D Riverside Drive, Suite 178

Sherman Oaks CA 91423

E-mail: info@thekisfoundation.org

Telephone: 818.981.7819

Fax: 818.981.7819

 

 

Nita’s PERSONAL SUPPORTERS:
David from Subway, Century and Crenshaw in Inglewood, Jacque, and others.

 

 

ENTERTAINMEMT:
Spoken Word Artist: Jody and Candice
Phyllis Zachary-Thomas Award Recipient: Dr. Cage Johnson accepted for him and shared Lanett
Presenter: Ferron Dozier
SC Trait.

Celena provided is a SC test with the answers http://www.cdc.gov/ncbddd/sicklecell/quiz/

 

 Phyllis Zachery-Thomas Award!!!!
The PZT Award goes to someone in our SC Community who has done exceptional works for our SC Members!!!

 

ABOUT THE PHYLLIS ZACHARY-THOMAS AWARED RECIPIENT:

 

In recognition of the 5th World Sickle Cell Day, during the So Cal Cell-a-bration held on June 22, 2013, we would like to acknowledge Dr. Cage Saul Johnson MD, who has 44 years of experience as a Board Certified Hematologist and as an Internal Medicine physician.

Dr. Johnson's positions include Director of the Sickle Cell Center at LAC+USC Medical Center and professor at Keck School of Medicine.

He has done years of Community Service as the Medical Director of Sickle Cell Camp; Provided Medical Service to young Athletes in the community, Mentoring Medical Students, is a National advisor to the National Institute of Health, and serves as an advisory to others locally, nationally and internationally.

Dr. Johnson’s education and training includes Medical School studies at Creighton University where he graduated in 1965.

He Interned and did his residencies at Cincinnati General Hospital.  Dr, Johnson was also a resident and did his fellowship at Los Angeles County-University of California Medical Center.

His expertise focuses on the diagnosis and management of hemoglobinopathies, complications of sickle-cell disease, parenteral iron therapy for iron deficient anemia, red cell enzyme deficiency, hemolytic anemia, and erythrocyte disorders.

Dr. Johnson has never had any malpractice, sanction or board actions against him and had a patient satisfaction rating is an astounding 100%!!!

Dr. Cage S. Johnson, we humbly thank you for your years of commitment to the Los Angeles County residents, the Sickle Cell Community, and beyond!!!

 

 

 

ACTIVITIES:
Westwood School of Nursing provided blood pressure & cholesterol checks.  They learned the truth about Sickle Cell Disease and Trait.  One Student shared that her project will be on Sickle Cell!!!

 

Raul & all members of the CHLA Blood Donor Center Mobile Unit Staff were ready, had more wanting to donate, but only able to obtain blood from ONE donor!

All attendees had one on one or joint time with Nita Thompson.  Together, we learned, work and contacts made.  Attendees took the SC test.

Donated bags and other  give-a-way items supplied by: Cord Blood Symposium and California Blood Bank Society Attendees, there vendors BioLife Solutions, LabCorp, PrepaCyte CB, Rees Scientific, and Sally's ion hair treatment by way of Jacque!


Thank you to ALL others I did not named who helped, donated, or

I was in contact with who wanted to attend or help out, but didn't (there is always next year)! 

 

GOALS FOR NEXT YEAR

BECAUSE ~ WSCD IS NOT A “ME” THING, IT IS A “WE” THING:

1.        WORK ON ADDRESSING ISSUES ABOUT LACK OF BLOOD AND MARROW DONORS!

2.       OBTAIN MORE PEOPLE TO HELP!

3.       GET ALL SC ORGANIZATIONS TO BUY IN TO FORWARDING THE WSCD FLYERS AND HELP!

4.       GET THOSE WHO HAD SUGGESTIONS TO DO THE WORK TO MAKE IT HAPPEN, NOT MAKE MORE WORK FOR NITA!

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Oakland

 

 

 

 

 

 

Tennessee

The Sickle Cell Foundation of Tennessee would like to announce/post our Sickle Cellabration recognizing World Sickle Cell Day:


Sickle Cell Sabbath
Sunday, June 16, 2013
10:00 AM 1:00 PM
Mt. Olive C.M.E.
538 Linden
Sr. Pastor Charlton L. Johnson

Sickle Cellabration's
(World Sickle Cell Day Programs)
Wednesday, June 19, 2013
Mt. Olive C.M.E.
538 Linden
Memphis, TN 38103
6:00 PM to 9:00 PM

&

Saturday, June 22, 2013
10:00 AM to 12:00 PM
Matthew Walker Health Center
1035  14th Avenue North
Nashville, TN 37204
Refreshments will be served.
Call 888-695-0006 to R.S.V.P.

Our theme/concept will be "A Passport To The World" in which we will have food from all seven continents representing countries that are plagued with Sickle Cell Disease.

Global Tweets

World Sickle Cell Day 100 Million Tweets - $1 Million Dollar Campaign 
United Nations declared June 19th as World Sickle Cell Day


What better way to increase awareness than to leverage the second largest social media outlet, Twitter, by using the power of hash-tagging to create our very own trending topic; #WSCD2013! 

Join us in our effort on June 19th to help us reach 200k downloads of a specially recorded song by Vashawn Mitchell.