September 16, 2014
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Sickle Cell News Roundup

 June 19, 2010 -  Second  Annual World Sickle Cell Day
 This day of observance is the product of the December 18, 2008, United Nations Resolution that called for the recognition of sickle cell anemia as a public health problem and “one of the world’s foremost genetic diseases.” The resolution calls for member States and the organizations of the United Nations system to raise awareness of sickle-cell anemia on June 19th of each year at the national and international level.

  • SCDFOC would like to acknowledge the efforts of the Sickle Cell Disease International Organization (SCDIO) in bringing about the passage of this United Nations Resolution and in establishing this annual international day of awareness. http://www.un.org/News/Press/docs/2008/ga10803.doc.htm

    Events around the world include:


     

    Sickle Cell Disease Association of America, Inc. Names New President and Chief Operating Officer

     

     BALTIMORE, MD (June 1, 2010) - Duane N. Bruce, Chairman of the Sickle Cell Disease Association of America, Inc. (SCDAA), headquartered in Baltimore, Maryland, today announced the executive search for the new President and COO has successfully concluded. SCDAA announced that the search has resulted in the retention of Sonja Lynae Banks of Birmingham, Alabama as its new President and Chief Operating Officer.

     

    Ms. Banks arrives from the St. Vincent's Health System in Birmingham where she most recently served as Director of Community Services and Outreach and Adult Indigent Services. Her previous professional experience includes leadership roles within the United Negro College Fund and United Way of Central Alabama.  Ms. Banks' academic credentials include a Bachelor's degree from the University of Alabama and a Master's Degree in Public Administration and Business from Jacksonville State University. In addition, Ms. Banks is in progress to complete a Doctorate of Education from Nova Southeastern University. Ms. Banks brings to SCDAA a broad background in nonprofit management, organizational development and fundraising expertise. Mr. Bruce, the SCDAA Board of Directors, and SCDAA Interim President, Elizabeth B. Simpson, give their full support and endorsement of Ms. Banks as the SCDAA begins the process of transitioning the strategic and operational direction of the SCDAA to Ms. Banks, where she will assume full accountability beginning Tuesday, June 1, 2010.


     

    NIH Halts SWiTCH Study

    On behalf of the National Heart, Lung, and Blood Institute (NHLBI), we would like to share with you news about a sickle cell disease clinical trial, the Stroke With Transfusions Changing to Hydroxyurea (SWiTCH) study. The multicenter clinical trial compared treatments to reduce the risk of additional strokes while minimizing the adverse effects of treatment such as iron overload in young participants (between the ages of 5 and 19) with sickle cell disease and a history of stroke and iron overload. The study was stopped early because a regular review of the data indicated that the experimental treatment was unlikely to prove better than the standard treatment. The NHLBI issued a press release about the early termination of the study, which can be found at: http://public.nhlbi.nih.gov/newsroom/home/GetPressRelease.aspx?id=2709.

     The preliminary results of this study support the use of the standard treatment of periodic blood transfusions for reducing the risk of additional strokes in young, high-risk patients combined with deferasirox (EXJADE®), an FDA-approved drug to treat chronic iron overload. The alternative treatment that was tested --  hydroxyurea combined with phlebotomy -- does not appear to be better than this standard treatment. 

    Protecting study participants is the NHLBI’s priority, and when an experimental treatment fails to meet its predetermined goals, it is best to return participants to standard treatment as soon as possible. The NHLBI remains committed to continuing to support research to identify new or improved ways to reduce the burden of sickle cell anemia’s most severe symptoms on our children.

     The results from SWiTCH do not affect the majority of sickle cell disease patients who are currently benefiting from hydroxyurea.  NHLBI-supported research has shown that hydroxyurea helps prevent pain crises and some lung complications in adults. Patients currently taking hydroxyurea should continue taking the treatment as prescribed and should talk to their primary care provider if they have any concerns.

     Please let us know if you have any questions about the study. For scientific questions, please contact W. Keith Hoots, M.D., director of the NHLBI Division of Blood Diseases and Resources, at 301-435-0080.


     

    New Book Published - Sickle Cell Disease - 100 Years Later". by Phyllis Zachery-Thomas

    This book provides a transparent look into my personal struggle with sickle cell disease and how it led me to the formation of SCD Soldier Network, Inc. I co-authored the book with Atlanta Historian Dan Moore of the Apex Museum and founder of Marrow for Life. The book also includes the inspiring stories of others who battle the disease as well as it gives you the history of sickle cell and information about the blood disorder. I am very pleased with this project and am asking for your support. Please purchase your copy today, I promise you won't be disappointed. Please see attached flyer or access the website to purchase the book by clicking on the link www.createspace.com/3458126  Fifty percent of the proceeds from the sale of this book will be donated to SCD Soldier Network in order to fulfill it's mission


     

    Articles in the Medical Literature

    1. Pulmonary hypertension in sickle cell disease children under 10 years of age.
      Colombatti R, Maschietto N, Varotto E, Grison A, Grazzina N, Meneghello L, Teso S, Carli M, Milanesi O, Sainati L.
      Br J Haematol. 2010 Jun 10. [Epub ahead of print]
       
       
    2. Moving young people with sickle cell disease from paediatric to adult services.
      Howard J, Woodhead T, Musumadi L, Martell A, Inusa BP.
      Br J Hosp Med (Lond). 2010 Jun 9;71(6):310-314.
       
       
    3. Hospital self-discharge among adults with sickle-cell disease (SCD): associations with trust and interpersonal experiences with care.
      Haywood C Jr, Lanzkron S, Ratanawongsa N, Bediako SM, Lattimer-Nelson L, Beach MC.
      J Hosp Med. 2010 May-Jun;5(5):289-94.
       
       
    4. High mortality from P. falciparum malaria in children living with sickle cell anemia on the coast of Kenya.
      McAuley CF, Webb C, Makani J, Macharia A, Uyoga S, Opi DH, Ndila C, Ngatia A, Scott JA, Marsh K, Williams TN.
      Blood. 2010 Jun 8. [Epub ahead of print]
       
       
    5. Management of Painful Vaso-Occlusive Crisis of Sickle Cell Anemia: Consensus Opinion.
      Mousa SA, Momen AA, Al Sayegh FA, Jaouni SA, Nasrullah Z, Saeed HA, Alabdullatif A, Sayegh MA, Zahrani HA, Hegazi M, Mohamadi AA, Alsulaiman A, Omer A, Kindi SA, Tarawa A, Othman FA, Qari M.
      Clin Appl Thromb Hemost. 2010 Jun 7. [Epub ahead of print]
       
       
    6. Depression and loneliness in Jamaicans with Sickle Cell Disease.
      Asnani MR, Fraser RA, Lewis NA, Reid ME.
      BMC Psychiatry. 2010 Jun 7;10(1):40. [Epub ahead of print]
       
       
    7. Lactate dehydrogenase as a predictor of kidney involvement in patients with sickle cell anemia.
      Gurkan S, Scarponi KJ, Hotchkiss H, Savage B, Drachtman R.
      Pediatr Nephrol. 2010 Jun 2. [Epub ahead of print]
       
       
    8. The risks and benefits of long-term use of hydroxyurea in sickle cell anemia: A 17.5 year follow-up.
      Steinberg MH, McCarthy WF, Castro O, Ballas SK, Armstrong FD, Smith W, Ataga K, Swerdlow P, Kutlar A, DeCastro L, Waclawiw MA; Investigators of the Multicenter Study of Hydroxyurea in Sickle Cell Anemia and MSH Patients' Follow-Up.
      Am J Hematol. 2010 Jun;85(6):403-8.
       
       
    9. Mortality of children with sickle cell disease: a population study.
      Fernandes AP, Januário JN, Cangussu CB, de Macedo DL, Viana MB.
      J Pediatr (Rio J). 2010 May 27;86(4). [Epub ahead of print]
       
       
    10. GMI-1070, a novel pan-selectin antagonist, reverses acute vascular occlusions in sickle cell mice.
      Chang J, Patton JT, Sarkar A, Ernst B, Magnani JL, Frenette PS.
      Blood. 2010 May 27. [Epub ahead of print]
       
       
    11. Association of G6PD with lower haemoglobin concentration but not increased haemolysis in patients with sickle cell anaemia.
      Nouraie M, Reading NS, Campbell A, Minniti CP, Rana SR, Luchtman-Jones L, Kato GJ, Gladwin MT, Castro OL, Prchal JT, Gordeuk VR.
      Br J Haematol. 2010 May 9. [Epub ahead of print]
       
       
    12. Prevalence and clinical correlates of microalbuminuria in children with sickle cell disease.
      Becton LJ, Kalpatthi RV, Rackoff E, Disco D, Orak JK, Jackson SM, Shatat IF.
      Pediatr Nephrol. 2010 Aug;25(8):1505-11. Epub 2010 May 27.
       
       
    13. Dietary Water and Sodium Intake of Children and Adolescents With Sickle Cell Anemia.
      Fowler KT, Williams R, Mitchell CO, Levy MC, Pope LF, Smeltzer MP, Wang WC.
      J Pediatr Hematol Oncol. 2010 May 24. [Epub ahead of print]
       
       
    14. A controlled, longitudinal study of the social functioning of youth with sickle cell disease.
      Noll RB, Kiska R, Reiter-Purtill J, Gerhardt CA, Vannatta K.
      Pediatrics. 2010 Jun;125(6):e1453-9. Epub 2010 May 24.
       
       

    15. Role of Arginase in Sickle Cell Lung Disease and Hemolytic Anemias  Claudia R. Morris  The Open Nitric Oxide Journal, 2010, 2, 41-54 Full text PDF at  http://www.bentham-open.org/pages/gen.php?file=41TONOJ.pdf&PHPSESSID=a301adc30682a4b803df8a9dff075999


     

    Conferences and Activities of Interest to the Sickle Cell Community


     June 19, 2010 Toronto, ON- World Sickle Cell Day Celebration

    Saturday June 19, 2010  6:30pm - 9:30pm  Delta Toronto East  2035 Kennedy Road Toronto,  ON M1T3G2  Call the

    Sickle Cell Association of Ontario 416-789-2855 email sicklecell@look.ca or email info@sicklecellontario.com visit us on the web www.sicklecellontario.com


     
    Say It Loud! Conversations on Sickle Cell Disease Teleconference Wednesday, June 30, 2010

     

    Choose a time best for you: 12:30 p.m. to 12:55 p.m. EST or 6:30 p.m. to 6:55 p.m. EST You’re invited to join in by dialing 1 712 432-0080

     

    Passcode 490765# Access available as long as lines are open. Host: Mary Bentley LaMar, Executive Director

     

    The Sickle Cell Association of New Jersey, Inc., (SCANJ)

     
    Say It Loud! Conversations on Sickle Cell Disease is a collaborative effort initiated by The Sickle Cell Association of New Jersey, Inc., The Donna T. Darrien Memorial Foundation, The Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter and The Sickle Cell Disease Foundation of California.  “Say It Loud!...” is open to all who are interested in spreading the word about Sickle Cell Disease.  For more information contact Mary at sicklecellanj@gmail.com or 973 482-9070.

    June 19. New York- World Sickle Cell Day - Be Sickle Smart Empowerment Day, Saturday June 19. 10 A.M. - 5P.M. Embassy Suites 102 North End Avenue, New York (Battery Park City- Lower Manhattan). Please join Dr. Ian Smith at this special one-day-only event. To register call: 347-533-8485


    June 19, Edison, New Jersey -  Attendees of Sickle Cellabration can expect educational workshops for families, enjoyable activities for kids, exhibits and the Cellabration Luncheon that honors children in the New Jersey Sickle Cell Poster Child Program.   There will also be the Dr. Charles Drew Commemorative Blood Drive from 9am to 3pm.

    For more information, please contact Mary Bentley LaMar at 973.482.9070 or sicklecellanj@gmail.com.

    You may also log onto sicklecellabration.org
    Seating is limited so please RSVP for this FREE event by  Friday, June 11.


    June 17 and 18  2010  King's College London -  Sickle Cell in Focus (SCiF) is an annual, two-day summer conference held at King's College London Demark Hill campus to highlight and discuss emerging clinical complications and clinical management of sickle cell disease. The clinical and scientific research lectures are aimed at an audience of consultants, academics, trainee doctors and health professionals involved in the care of patients with the disease. It attracts local, national and international guest speakers and delegates.  Full details can be found at: http://www.kcl.ac.uk/schools/medicine/research/gcbt/scif

    2nd World Sickle Cell Day, June 19, 2010  - Multi city world wide See http://aablooddriveandmarrowregistry4sicklecellawareness.webs.com/worldsicklecellday.htm


    June 29 NY, NY - The 19th Annual Scholarship  Awards Ceremony, Sunday June 27th, 2010   At Oberia D. Dempsey Multi-Service Center ,127 West 127 Street , NY, NY . For more information, Please call 347-533-8485 , www.sctpn.org

       

     12 th Annual Walk for Sickle Cell Education and Awareness , Saturday, September 18, 2010 West 67th Street and Central Park West. Rain or Shine, Please Join us and help us Break the Sickle Cycle.  347-533-8485, www.SCTPN.org

    July 15 - 18 Kiawah Island Resort near Charleston, South Carolina - 10th Annual Using Transcranial Doppler, MRI/MRA and Transfusion to Prevent Stroke in Sickle Cell Disease. This activity has been approved for AMA PRA credit. For more information, contact: Office of Continuing Medical Education Medical University of South Carolina, Charleston, SC 29425 Phone: 843-876-1925 • Email: maxwells@musc.edu


    July 24, 2010 Ponte Vedra Beach, Florida - Announcing sickle cell workshop at  SERGG/SERC annual meeting The SERC concurrent sickle cell workshop will be held on: Saturday, July 24, 2010 from 8:00 am – 5:00 pm   SERGG/SERC July 22-24, 2010  Sawgrass Marriott Hotel Ponte Vedra Beach, Florida 

    Deadlines: Abstract submission – friday, may 21 (5:00 pm) Meeting registration – Friday, June 25 Hotel registration – Wednesday, June 30

    Click here for  SERGG/SERC meeting information and registration forn  Click here for an agenda. Click here for  the abstract submission form.  Your support of the full annual meeting would be greatly appreciated; however, if you can only attend the one-day workshop, the advance registration fee is only $85.00!


    July 24 - Boston MA http://www.cscsginc.org/

      5th Annual  Walkathon


    July 20-23, 2010 Accra, Ghana within the First Global Congress on Sickle Cell Disease, July 20-23, 2010, co-sponsored by the Sickle Cell Center at Children’s Hospital of Philadelphia and The Sickle Cell Foundation of Ghana. For information email sicklecellsymposium@email.chop.edu

    The Congress website: www.sicklecellglobalcongress.org  is now online. Please check it often for announcements and changes.

    2. Abstract Submission Deadline

    We have extended the abstract submission deadline to March 31, 2010.  If you want to revise and resubmit an abstract you already sent to us, you may do so. Please mark the resubmitted abstract with “RESUBMISSION” on the top.

    3. Registration

    Please go to our website: www.sicklecellglobalcongress.org where you can register online (in English only) or download the Registration Form (which is in English, French, and Portuguese) and send by mail or fax.  For more information, please email sicklecellsymposium@email.chop.edu or call:  Trudy Tchume-Johnson   +001-267-426-5037, Henrietta Enninful-Eghan +001-267-426-7492, or, Tannoa Jackson   +001-267-426-9338.


    August 23 -27 Bethesda, MD - NIH Annual Sickle Cell Disease Clinical Research Meetings http://www.nhlbi.nih.gov/meetings/sicklecell-10/index.htm

     

    September 21-24, 2010 Washington DC  - SCDAA 38th Annual Convention  Gaylord National Hotel & Conference Center Washington D.C. Sickle Cell Disease Association of America, Inc. www.sicklecelldisease.org

    -  This conference is designed for patients, parents, health care providers, administrators, educators, advocates, researchers and community-based organizations.  The focus is on strengthening the infrastructure of the sickle cell community through education and action; fostering advocacy and collaborative networks with the best possible programs, practices and policies that result in prevention of illness, improvement of the quality of life of affected persons, and finding a cure for Sickle Cell Disease.


    October 4 Atlanta GA - Sickle Cell Education Day 9 - 3  - Loudermilk Center:  40 Courtland Street, Atlanta, GA 30303


    22 - 27 November 2010— Raipur (Chhattisgarh) IndiaSickle Cell Disease International Organization in collaboration with Centre for Genetic Diseases & Molecular Biology Department of Biochemistry, Pt. J.N.M.MedicalCollege, Raipur (C.G.) INDIA

    are organizing the Fourth International Congress 2010 Sickle Cell Disease International Organization                                                           

    1.Simple models of survey/ screening. 2.  Methods of counseling for :a. General population b. Youth & marriageable age group (premarital counseling) c. Post marriage counseling for carriers and sufferers including antenatal checkup, family planning, MTP, adoption of child. d. Counseling for sufferers of the disease. e. Counseling for the parents of sickle cell disease affected children. 3.       Models of treatment plan at primary, secondary and tertiary level including plan for sickle cell clinics at village level, district level and super specialty clinic at medical college level. 4.       Scope of research in developing countries. 5.       Advocacy for financial support, scope of a network and linking the various NGOs working in the field of sickle cell disease.  KEY DATES 22nd November 2010 - Preconference briefing:to be attended by NGOs, Doctors and Technicians working in the field of sickle cell anemia. 23ed -24th November 2010- Scientific Sessions. 25th November 2010- General/Executive body meeting of the congress & draft presentation of the proceedings. 26th November 2010- Sight Seeing.27th November 2010- Valedictory Function; Conclusion note, approval of proceedings. FIRST ANNOUNCEMENT & CALL FOR PAPERS  http://4sccongress.co.in

     



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