Sickle & Flow – Atlanta GA

June 18, 2016 Sickle & Flow – Atlanta GA http://www.sickleandflow.org/about
Sickle & Flow is a partnership with members of the Atlanta community, including local hip hop producers, DJs, patient advocates, health care workers, and scientists. We’re hosting a sickle cell awareness event as part of World Blood Day, on Saturday June 18, 2016. We want to engage the ATL community to promote patient advocacy and biomedical research. As a part of the evening, we will host a Be the Match event, collecting cheek swabs from potential donors, to partner with us in our efforts to more effectively treat and cure sickle cell disease.
6th International African Symposium on Sickle Cell Disease July 11th – 15th, 2016 Accra, Ghana
Call for Abstracts
Abstract submissions will be accepted for the following categories:
Laboratory Diagnosis
Clinical Management
Public Health and Health Education
Psycho social Interventions
Blood Transfusion Services
Newborn Screening and Follow Up
New Therapies
More information regarding submission guidelines and deadlines will be available shortly. For more information, please email SickleCellSymposium@email.chop.edu​
Overview
The Comprehensive Sickle Cell Center at The Children’s Hospital of Philadelphia, the Sickle Cell Foundation of Ghana, and other international partners have been organizing a series of international symposium aimed at improving knowledge and practices in the management of SCD in Africa.
The target audience for this symposium are healthcare workers, public health officials, laboratory technologists, community-based organizations, and support groups for patients and families

Launch of the New SCInfo.org Website

The Sickle Cell Information Center website, http://www.scinfo.org/ began in 1997, shortly after internet communication took off. Founded by James R. Eckman, MD, Professor of Hematology and Medical Oncology at the Winship Cancer Institute and Professor of Medicine and Adjunct Professor of Pediatrics in Medical Genetics at Emory University School of Medicine, and Allan Platt, PA-C, MMSc, DFAAPA, Academic Coordinator and Director of Admissions for the Emory University Physician Assistant Program, http://www.scinfo.org/ has been the leading web-based resource for information about sickle cell disease for the past twenty years.
The website is widely used, both throughout the United States and around the globe, regularly averaging 13,500 hits per month, and over 150,000 per year. When Dr. Eckman retired in 2013, after three remarkable decades of work developing the Comprehensive Sickle Cell Program at Grady Health and caring for thousands of patients in the Atlanta area, Allan Platt continued to maintain http://www.scinfo.org/.
Now, we are pleased to announce that the site has been completely reorganized with a new format, fresh images, and revised text. A collaborative interdisciplinary team of scholars drawn from the Emory Center for Digital Scholarship, the Rollins School of Public Health, and the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta (CHOA) completed this work. Both Dr. Eckman and Allan Platt have been involved in the re-design and we have taken care to leave many familiar aspects of the original website in place so that patients, families, educators, employers, and healthcare providers can access what they need with ease. Generous support for revising the website came from the University Research Committee (URC) of Emory University, from the Emory Center for Digital Scholarship (ECDS) Andrew W. Mellon Foundation Award, and from the Aflac Cancer and Blood Disorders Center. We are grateful for the opportunity made possible by this funding and proud to build on the excellent work started by Eckman and Platt so many years ago.
As always, http://www.scinfo.org/ is committed to providing sickle cell patients and their families and health care providers with professional education, news, research updates and access to up-to-date sickle cell resources worldwide. New features of the site include daily postings of new PubMed articles, links to recent articles from news outlets across the web, additional multilingual resources for patients, families and health care providers, listings of state, national and international sickle cell organizations, and an expanding list of global resources on sickle cell disease. Clinical guidelines are being up updated and will soon be available. The site maintains the privacy of all individuals and no information is gathered. The site is not supported by and does not accept advertising requests. Content and responses are reviewed by the Center Advisory Board. And finally, Information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her physician.
In addition to thanking the institutions that supported this effort, it is important to recognize the work of Mary E. Frederickson, PhD, Clinton H. Joiner, MD, PhD, Peter A. Lane, MD, James R. Eckman, MD, Allan Platt, Allen Tullos, PhD, Wayne H. Morse, Jr., Erin Hecht, PhD, Mekdes Tsegas, Lauren McNaughton, Chase Lovellette, Adrya Stembridge. We also thank the following individuals and institutions for giving us permission to use images and materials from their collections: Oregon State University, Hertz Nazaire, Ellen Weinstein, and the Estate of Twins Seven Seven (Prince Taiwo Olaniyi Oyewale-Toyeje Oyelale Osuntoki).
We hope you enjoy the changes that have been made and the continuity that the site provides. We welcome comments and suggestions for more revisions, so let us know what you think. http://scinfo.org/

NIH: Sickle Cell in Focus

Sickle Cell Conferences and Events
Hemoglobinopathy Counselor Training Course will be held on April 7-8, 2016. The two-day course, presented by the Cincinnati Comprehensive Sickle Cell Center, will be held at Cincinnati Children’s Hospital Medical Center. The course registration fee is $150. The deadline to register is March 24, 2016 and registration is limited. For more information, including a course brochure, please email: SCDEvents@cchmc.org Registration is also available online at www.regonline.com/2016scdcounselorcourse

Event: Sickle Cell in Focus (SCiF) 2016, National Institutes of Health, Bethesda, Maryland, USA
Date: Thursday 2nd – Friday 3rd June 2016
Venue: Natcher Conference Centre, National Institutes of Health, Bethesda, MD 20894 USA

The 10th Sickle Cell in Focus conference returns to the USA in June 2016. Sickle Cell in Focus is an internationally renowned educational update for sickle cell disease. It attracts a wide audience of clinicians, academics and other healthcare professionals involved in the disease from around the world.

Website: http://www.ststn.co.uk/scif/sicf2016/
To book: Free registration will be opening soob. If you would like to be kept up-to-date, please join the STSTN mailing list by sending an email to: info@ststn.co.uk
Contact details: info@ststn.co.uk / @STSTNetwork / www.ststn.co.uk

Marrow transplant frees sickle cell sufferer from pain

 

http://www.usatoday.com/story/news/nation/2015/01/29/marrow-transplant-frees-sickle-cell-sufferer-from-pain/22557607/
ROCHESTER, N.Y. — With sickle cell anemia, it’s never just one kind of pain.
Sometimes it’s a vicious ambush, fast and pulsating. Sometimes it settles in slowly and stays for days, throbbing deep in the bones.
Sometimes the pain is in one spot. Sometimes it’s in three. Sometimes it’s everywhere, hundreds of knives, jabbing and cutting from head to toe, grinding down the body and foreclosing on any hope for the future.
“It’s the worst feeling in the world,” said Stephanie Ramos of Irondequoit. “It’s like your body is attacking its own self. Beating up on its own self. … It’s a horrible disease. I hate it.”
Ramos knows sickle cell anemia well. She was born with it 25 years ago. Doctors told her mother then that she would be lucky to reach adulthood; each birthday was a celebration and, quietly, a foreboding.
What would the next year bring? How many crises, how many trips to the hospital? How much more to be endured, and for how much longer?
It’s a disease of pain, and three years ago, Ramos was exhausted by it.
Wixon: Sickle cell disease can’t hold back Lincoln’s Tafari Witter through sporting, academic endeavors
http://www.dallasnews.com/sports/high-schools/headlines/20150216-wixon-sickle-cell-disease-can-t-hold-back-lincoln-s-tafari-witter-through-sporting-academic-endeavors.ece

Tafari Witter is near midcourt, bent forward, tugging on the bottom of his shorts, trying to catch his breath. A substitute is headed to the scorer’s table, but Witter looks over to the sidelines and, with a wave of his hand, indicates he’s not leaving the game.
It might be the only time that Lincoln’s starting point guard doesn’t have his priorities straight.
Witter is a razor-sharp student who is on track to be valedictorian of Lincoln’s Class of 2015. He loves Advanced Placement Calculus BC, is part of the Dallas ISD’s Future Leaders Program and in the fall will attend Texas, where he eventually wants to get a master’s degree in business administration.
NBA point guard Derrick Rose is among the people who inspire him, but so is a star from a very different arena: theoretical physicist Stephen Hawking.
Lincoln coach Cedric Patterson smiles when he hears that.
“He’s a unique kid,” Patterson said.
Witter is so unique, and interesting, and engaging, it’s hard to squeeze his sickle cell disease into the conversation. And he likes it that way.

Minorities and Blood Donations

African American Blood Drive for Sickle Cell Disease Awareness

Although people with sickle cell anemia are always in need of blood donations, we focus on awareness each February – “African American (Black) History Month” and September – “Sickle Cell Month”

dreamstime_13792412_smMost Blood Donor Centers are by appointment so, please contact them by phone and set up yours. Also, ask them if you can get names and phone numbers of people from your church, job, neighborhood, etc. on a commitment sign up sheet, can you fax the sign up sheet(s) directly to them and if they will call the donors and set up their appointments.

As African Americans, we need African American blood because it is the best match for these patients. If the blood is not a very close match, the patient may reject the transfusion and it could be fatal. Presently, only 5% of African Americans donate blood and it is just not enough. People with the sickle cell trait can not help a person with sickle cell disease, but we can help someone else!

Most children with sickle cell disease will need at least one blood transfusion before the age of 11. For most surgeries (major or minor), a transfusion is necessary and more often today children, teens and adults are receiving a blood transfusion every two to four weeks.

For more information or other ways you can assist, call:

Your Local:  Children’s Hospital Sickle Cell Clinic or Sickle Cell Foundation

web: http://www.givelife.org/

Re-post from Sickle Cell Information Center website – http://scinfo.org/patients-and-families-other-resources/donate-blood-for-sickle-cell-patients

Blood Donation Web Links

Sickle Cell Information – Why give Blood at Please Give Blood. org http://www.pleasegiveblood.org/sickle.htm

American National Red Cross headquarters in Washington, D.C.
www.redcross.org

http://www.givelife.org/

Giving Blood or Giving Bone Marrow

American Association of Blood Banks (AABB) at http://www.aabb.org/
National Marrow Donor Program (NMDP) at http://WWW.Marrow.org/

The International Red Cross Movement

International Committee of the Red Cross (ICRC) at http://www.icrc.org/
International Federation of Red Cross and Red Crescent Societies at http://www.ifrc.org/

Sickle Cell Information Center Web Links

  1. Bone Marrow and Stem Cell Transplant Resources
  2. Stroke Prevention and Trans Cranial Doppler -TCD Screening
  3. TCD Patient Information for handouts
  4. Chelation Therapy for Iron Overload
  5. Visit our Chelation Conference
  6. Chelation Education Coloring book pdf
  7. How to do Chelation Therapy pdf
  8. STARS Clinic for stroke prevention

Calling All Artist with Sickle Cell

Artist with Sickle Cell:

Here is an opportunity to show off your art talents. All sickle cell disease and sickle cell trait individuals, adults, children and families are invited to participate in the online art project.

The artSPEAKS Program is ready to go! We’re excited to start seeing artwork created by children and adults that allows them to share their feelings and thoughts on living with Sickle Cell. Below is a flyer that details the program.

This is an online program in which children with sickle cell and their families can create artwork and then upload it to our website. Each month several pieces of art will be chosen to highlight and the artists will receive a $25 savings bond as well as an invitation to an end of year celebration for all of the highlighted artists.

The art can be uploaded at any time — the “contest” will reset with a new theme each month. People can upload as many pieces of art as they want. Learn more and participate at: www.wepsicklecell.org.
For additional information, questions or inquiries about the art project, please send an email to: www.wepsicklecell.org

 

Screenshot 2015-12-03 07.17.28

Survey Sickle Cell and Hearing Loss

Dr. M. Dawn Nelson, Ph.D. is an Associate Professor of Audiology at Central Michigan University. She has an 18 year old daughter with Sickle Cell Disease SS. Dr. Nelson is currently directing research studying the association between dizziness/balance and hearing problems and Sickle Cell Disease.

Dr. Nelson attended a Sickle Cell conference at the FDA (February 7, 2014) where many persons with Sickle Cell Disease expressed interest in research related to hearing loss. Since then, she has been contacted by the FDA who reported many individuals from the conference had been contacting FDA, interested in being involved in a research study, which has now been developed. This research survey has received the appropriate University Institutional Review Board approval and is ready for distribution.
All Adults Living with Sickle Cell Disease are strongly encouraged to complete a short survey. Your responses to the survey will help Dr. Nelson to evaluate the correlation between Sickle Cell Disease and dizziness/balance and hearing problems. Dr. Nelson is confident that with enough survey completions from sickle cell patients, she can ultimately make a significant contribution towards a better quality of life for the Sickle Cell community. But your completion of this important survey, as soon as possible, is necessary in order to be successful.

Please find below the email and Facebook links to the survey

Email: https://www.surveymonkey.com/r/GZH8FFP

Facebook: https://www.surveymonkey.com/s/KSJLSQM

Sickle Cell Disease Cured with Stem Cell Transplant

UIC physicians have cured 12 adult patients of sickle cell disease using stem cell transplantation from healthy, tissue-matched siblings.
The transplants at UI Health were the first performed outside the National Institutes of Health campus in Maryland, where the procedure was developed.
Because the technique eliminates the need for chemotherapy to prepare the patient to receive the transplanted cells, it offers the prospect of a cure for tens of thousands of adults with sickle cell disease.
About 90 percent of the approximately 450 patients who have received stem cell transplants for sickle cell disease have been children. Chemotherapy was considered too risky for adult patients, who are often more weakened than children by the disease.
“Adults with sickle cell disease are now living on average until about age 50 with blood transfusions and drugs to help with pain crises, but their quality of life can be very low,” says Damiano Rondelli, chief of hematology/oncology and director of the blood and marrow transplant program at UI Health.
“Now, with this chemotherapy-free transplant, we are curing adults with sickle cell disease, and we see that their quality of life improves vastly within just one month of the transplant,” said Rondelli, Michael Reese professor of hematology in the College of Medicine. “They are able to go back to school, go back to work, and can experience life without pain.”

https://news.uic.edu/cure-for-sickle-cell

<http://news.uic.edu/chicago-woman-cured-of-sickle-cell-disease>

Sickle Cell Newborn Screening Grant

SCDAA Announces HRSA Newborn Screening Program Grant Co-Leads http://www.sicklecelldisease.org/index.cfm?page=news&id=91
The Sickle Cell Disease Association of America, Inc. National Headquarters (SCDAA) is proud to announce that it is the recipient of the Sickle Cell Disease Newborn Screening Project (SCDNBSP) cooperative agreement awarded by the Health Resources and Services Administration (HRSA). The Sickle Cell Disease Newborn Screening Project is a 2-year collaborative that utilizes its alliance with 10 of its most robust regional community-based organizations and stakeholders across the nation to improve sickle cell care for a broader population of patients. The award total is $2,679,000 a year for a period of two years beginning in June 2015 and ending in May of 2017. HRSA’s continued support of furthering the research, education and treatment of those living with sickle cell disease continues to be unwavering and relentless.
The purpose of the SCDNBS project is to support the endeavors of SCDAA in fortifying the quality of patient care on a holistic basis and not just the malady to address all needs of patients living with the disease. Ten (Co-Lead) community-based organizations were chosen specifically for their strength in leadership and partnership in 5 of the HRSA designated regions across the nation. These Co-Leads will extend their reach by uniting with multiple state partner community-based organizations and other institutions to deliver service to patients, with special focus in hard to service and rural areas to overcome social and service access obstacles. The SCDNBSP will link individuals living with sickle cell disease and their families to knowledgeable service providers, quality medical homes, education and counseling support, community facilitators and navigators for unmet needs and resultant comprehensive life quality care.
One of the major components of the national effort to enhance the overall quality of life for patients living with sickle cell disease is the new Get Connected, patient-powered registry. The registry will support the patient population by developing a more involved and knowledgeable community of individuals. The registry houses basic demographic information for patients, and also allows patients to keep their medical history secured and up-to-date in one electronic location. The registry will provide a continuous stream of newsletters, community forums, and other industry specific information. By maintaining a national patient registry where all patients can actively stay up-to-date on the sickle cell community and maintain their medical histories, the community will become much stronger and unified in their efforts to build better health care solutions for patients across the country. In addition, Get Connected will allow SCDAA to glean aggregate level data from patient entries, including gaining an overview of how many individuals currently living with sickle cell disease reside in the United States. This pertinent data can then be utilized to request substantial funding support for research and treatment of patients with sickle cell disease. This brings us another leap closer to finding a cure.

Co-Leads and state partners in addition to providing enrollment, assessment and follow up, are working to plan and implement educational programs to enhance patient education and compliance. SCDAA is building 2 national educational programs directed at increasing patient compliance for treatment modalities, and care coordination. The first educational program is based on a national patient compliance, education & follow-up program for newly identified patients. This program focuses on teaching parents who have a child with sickle cell disease, the knowledge and ability to provide coordinated care for their children. The second educational program is a community-based outreach, education and parent services program entitled “Building Hydroxyurea Awareness in the Sickle Cell Community.” The purpose of this component is to enhance community awareness about the effectiveness of hydroxurea, the only treatment for SCD approved by the FDA. These programs will be implemented within the 5 HRSA Regions utilizing the effective reach of sickle cell educator-counselors and lay-promotors.

While Co-Lead Partners are working to create a more seamless care coordination infrastructure for sickle cell patients, SCDAA is also working within the project to implement a strategy to employ a shared vision for creating access to quality care for individuals with SCD throughout the lifespan through its Collective Impact Model. Collaborating to build the vision of both patients, health care professionals and government bodies to develop the best practice methods to provide quality care for all aspects of patient’s lives furthers the SCDAA mission.