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.
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: firstname.lastname@example.org
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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
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.
African American Blood Drive forSickle 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”
Most 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
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
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
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.”
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.
NICHQ, the National Institute for Children’s Health Quality, today announces “Sickle Cell Pain in the Emergency Department: A Guide to Improving Care,” a step-by-step manual for anyone on the front lines of acute care, from emergency room (ER) doctors and nurses, to hematology specialists. The guide, launched on World Sickle Cell Day, is the result of a five-year collaboration between 15 multidisciplinary health care provider teams nationwide. Throughout the process, teams traded lessons learned and best practices for improving treatment for adults and children with sickle cell disease (SCD) in the ER.
An inherited red blood disorder, SCD is a chronic illness characterized by anemia and unbearable bouts of pain, so providing relief quickly is crucial to treatment. This incurable disease can lead to declining health, poor quality of life and early mortality. NICHQ Strategic Project Director Dr. Suzette Oyeku, said, “Sickle cell disease patients wait in excruciating pain longer than they have to for treatment. Guidelines do exist, but they have not been consistently implemented, particularly in acute care settings. Our guide was designed to help providers bridge this gap.”
NICHQ’s SCD work was funded by The U.S. Health Resources and Services Administration (HRSA) which oversees the SCD Treatment Demonstration Program and the SCD Newborn Screening Program. As lead facilitator for the programs, NICHQ was responsible for organizing and reporting on meetings; collecting, analyzing and distributing best practice data; and serving as the liaison between HRSA and the teams. The two projects yielded many results in improving care for SCD patients in the ER. These included a reduction in the wait time for evaluation by 69 percent and a 29 percent improvement in the time between triage and receiving pain medication. One of the most significant outputs of the teams’ extensive work is “Sickle Cell Pain in the Emergency Department: A Guide to Improving Care.” The online publication offers best practice findings such as standardized order sets, a recommendation to consider using intranasal fentanyl and a color-coded, full body chart, reviewed by patients and doctors, as a standard pain assessment tool.
According to HRSA Project Officer Dr. E. Donnell Ivy, NICHQ and the Treatment Demonstration and Newborn Screening program grantees have pulled together an excellent resource. He said, “On World Sickle Cell Day and as Sickle Cell Awareness Month approaches, the timing for sharing this comprehensive guide could not be better. We congratulate NICHQ and all of our grantees on advancing the quality of care for these patients. As a result of their work, thousands of patients, from coast to coast, will receive better treatment in the ER.”
Declare Sickle Cell Disease a national health priority and support legislation to expand and establish SCD programs.
A Response to Your Petition on Sickle Cell Disease
As you know, sickle cell disease (SCD) is a common inherited blood disorder that affects an estimated 90,000 to 100,000 Americans, and can lead to lifelong disabilities and reduced average life expectancy. The disease disproportionately affects people of color, and occurs among roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births.
SCD is a major public health concern that warrants ongoing federal support, and is a priority for President Obama and his Administration.
That’s why the Department of Health and Human Services (HHS) is actively engaged in a number of efforts to help do the following:
Better identify individuals with SCD
Improve access to care
Gather data about best practices in order to improve treatment therapies
Raise awareness of SCD
Promote health education about SCD
Search for a cure through ongoing research efforts
HHS is developing Healthy People 2020 objectives to support SCD-related health promotion and disease intervention initiatives across the federal government. To evaluate progress in meeting these objectives and better inform future federally funded research and prevention efforts, the Department is developing a pilot national surveillance system to collect data to better understand characteristics of those affected by SCD, what complications these individuals are experiencing, and what gaps exist in meeting their health needs.
Through the Health Resources and Services Administration’s SCD Treatment and Newborn Screening Programs, HHS is also expanding access to care for individuals with SCD by increasing the number of providers treating patients with SCD who are knowledgeable about current treatment options and identifying those with the disease sooner so that they can begin receiving recommended treatments. HHS is also increasing patient education and outreach efforts for individuals with SCD or who are carriers of the sickle cell gene mutation to prevent infections and ensure needed medical care is received. You can read a recent report detailing these efforts here.
The Centers for Disease Control and Prevention (CDC) has additional materials to raise awareness of SCD among teachers, non-medical professionals, and other members of the general public — all of which you can find online here.
We’re also investing in critical research on SCD at institutions across the country. The National Institutes of Health (NIH) funds research focused on increasing the effective use of known SCD therapies, discovering new treatment options, ameliorating complications, and ultimately finding a cure. In September, NIH released the first systematic and evidence-based report to assist clinicians in delivering care to people living with SCD.
Finally, the CDC has an agency-wide working group to explore opportunities to address unmet needs in SCD research, surveillance, and health education. Through the efforts of this working group and consultation across agencies within HHS, the Department will consider other ways in which it can strengthen its current activities regarding SCD.
We still have much more work to do, but we will continue to make progress — not just to help the tens of thousands of Americans currently living with sickle cell disease, but to ensure that one day, we have a generation where the disease is only something that’s read about in history books.
Thank you for your adding your name to this petition, and for your involvement in the We the People platform.
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