Check out The Heart of Gold Sickle Cell Foundation of Northern Virginia latest fundraiser and learn how you can help
Donating to the DC Diaper Bank keeps bringing diapers to babies in need
The DC Diaper Bank provides diapers to social service organizations that are already helping families in need through comprehensive programs and services. As of October 2015 there are 30 organizations in the Diaper Distribution Network and growing each month. Collectively, the Distribution Network works to get an average of 100,000 diapers and other hygiene items to 3,200 families each month in Washington, DC, Maryland, and Virginia.
DC Diaper Bank has found that distributing diapers in this way ensures they reach those who need them most. It also provides partnering organizations a resource – diapers – they are not normally able to provide, increasing the services they can offer. By working with organizations that are already well established in the community and currently working with families in need, the DC Diaper Bank ensures that the diapers collected are distributed to infants and babies in the most efficient and timely manner. If you would like to learn more about becoming a Diaper Distribution Partner please contact firstname.lastname@example.org
Post from Sickle Cell Disease Coalition: http://www.scdcoalition.org/get-involved.html
People with sickle cell disease (SCD) are afflicted on two fronts – one by having a serious, chronic condition that inflicts pain and other complications – the other by a fragmented system of care.
Even though we know what causes SCD, there is only one approved treatment and no widely available cures. Individuals with SCD suffer from severe pain and infections with devastating complications such as brain injury, stroke, organ damage, and premature death. People with SCD are often unable to access quality care and the treatments they need.
The status quo is unacceptable, and we are setting out to change it.
Today, there are opportunities to transform this disease and the way we care for people with SCD. We are launching an international call to action on SCD by bringing together researchers, clinicians, individuals with SCD and their families, policymakers, and the private sector to focus our collective efforts and change the state of SCD around the world.
The time is now to change the course of this disease. Here’s how you can join us:
As an Organization
- Pledge to take on activities or programs that will move the needle on SCD. Advocacy organizations, government agencies, companies, policymakers, and foundations can contact us at email@example.com to share how they plan to help us transform SCD.
As an Individual
- Spread the word about the need to improve the state of SCD. Share our video and SCD fact images on social media. Use #conquerSCD to highlight our cause.
- Encourage your Member of Congress to join the Congressional Sickle Cell Disease Caucus.
- Read the report State of Sickle Cell Disease: 2016. This report was compiled by the American Society of Hematology based on the feedback of more than 100 thought leaders and has been endorsed by several organizations.
Sickle Cell Conferences and Events
The Sickle Cell Disease (SCD) Program at Children’s National invites you to the 7th Annual Family Education Symposium on “Living Well with Sickle Cell”.
Saturday, October 29, 2016 11:30 AM – 4:30 PM
Sheikh Zayed Campus for Advanced Children’s Medicine Children’s National Health System 111 Michigan Ave NW, 2nd Floor, Auditorium
Washington, DC, 20010
This year’s symposium will focus on helping patients and their families manage sickle cell disease while living life to the fullest.
New Sickle Cell Infographic From ASH
This “infographic” for sickle cell awareness was produced by the new Sickle Cell Disease Coalition, formed by American Society of Hematology a few weeks ago to align professional societies, Federal, and pharmaceutical stakeholders http://www.scdcoalition.org/
In 2000, Congress passed the Minority Health and Health Disparities Research and Education Act (P.L. 106–525) establishing National Institutes of Health’s (NIH) National Center on Minority Health and Health Disparities (NCMHD; recently renamed as National Institute on Minority Health and Health Disparities, NIMHD) and charged the center with administering special grant programs focusing on disparities, coordinating minority health disparities research across NIH Institutes, and spearheading the development of an NIH-wide Strategic Plan on health disparities. This effort resulted in unprecedented developments, including 27 NIH Institutes and Centers developing individual strategic agendas to eliminate health disparities. Some of these agendas recognized the importance of disparities in pain care.
At about the same time, the 106th United States Congress passed Title VI, Section 1603, of H.R. 3244 declaring the era starting 2000 as the “Decade of Pain Control and Research”[1,2]. Subsequent high-profile pain initiatives included the Veterans Pain Care Act of 2008 (H.R. 6122), Military Pain Care Act of 2008 (H.R. 5465), and the National Pain Care Policy Act of 2009 (H.R. 756/S.660), provisions from which were included in the Affordable Care Act (ACA) signed in to law by President Obama in March 2010 . These high-profile initiatives placed pain on the national agenda as a major public health problem—one with real social and fiscal consequences. The problem of pain cuts across disease entities and treatment settings. According to recent estimates, 116 million American adults suffer from chronic pain; pain remains the principal reason for which people seek medical care [4,5]. Chronic pain is strongly associated with societal costs measured in terms of disability, poor quality of life, relational problems, lost income and productivity, and higher health care utilization including longer hospital stay, emergency room visits, and unplanned clinic visits. The burden to Americans are reflected in an enormous annual expenditure that ranges $560–$635 billion in direct and indirect costs —a marked increase from the previously estimated cost of $100 billion  and an estimated cost of employees’ chronic pain to businesses of $61 billion . Despite chronic pain’s concerning socioeconomic impact, many aspects of pain care, training, and research remain grossly under-resourced [8,9]. Only less than 1% of the NIH research budget is invested in pain and symptom management research  (Box 1).
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Harvard Stem Cell Institute (HSCI) scientists have taken the first steps toward developing a treatment that would make bone marrow – blood stem cell – transplantation safer and, as a result, more widely available to the millions of people living with blood disorders like sickle cell anemia, thalassemia, and AIDS.
Bone marrow transplantation currently is the only curative therapy for these blood diseases. But, for the new, transplanted stem cells to do their work, the faulty stem cells must first be “evicted” or killed. Accomplishing that requires patients endure chemotherapy and radiation — a vicious assault on the body with life-long consequences.
In a study recently published in the journal Nature Biotechnology, HSCI researchers at Harvard University and Massachusetts General Hospital (MGH), in collaboration with Boston Children’s Hospital and Dana Farber Cancer Institute, have developed a non-toxic transplantation procedure using antibodies to specifically target blood stem cells in mice, an approach they hope will make blood stem cell transplants for these patients far less toxic. The new treatment removes more than 98% of blood stem cells, making it as effective as chemotherapy and radiation.
“Instead of using non-targeted drugs that have lots of collateral damage we thought we could take advantage of the precision of the immune system, in particular, antibodies,” said David Scadden, MD, Co-director of HSCI, the Gerald and Darlene Jordan Professor of Medicine at Harvard University, and senior author on the paper.
As part of the immune system, antibodies naturally seek and destroy foreign agents in the body. Rahul Palchaudhuri, a postdoctoral fellow in Scadden’s lab and first author on the paper, armed CD45-targeting antibodies with a payload that destroys only existing blood cells. The payload kills cells by means other than genetic destruction, in contrast to the current standard treatments.
“Antibodies are remarkably specific in what they target,” said Palchaudhuri, a chemist by training, with a background in cancer research. “We can direct them to CD45, a cell marker which is exclusively expressed in the blood system. That way we avoid toxicities to non-blood tissues.”
Unlike chemotherapy and radiation — which indiscriminately damage cells and tissues, healthy or otherwise — the CD45-targeting antibodies leave the thymus and the bone marrow, environments critical to the formation of T cells and innate immune cells, unharmed. Animals receiving the antibody treatment were able to withstand infection that was lethal to mice treated with radiation. Currently, infections after transplant are common and may be severe, causing death in a substantial number of people.
About one in ten patients do not survive transplantation following the standard treatments. Those who do may suffer from stunted growth and intellectual development, infertility, and damaged DNA; at present, patients can only attempt a curative transplant by increasing their risk of developing cancer later.
Because of this, families and doctors often shrink from transplant options, particularly when it comes to treating children, and it will limit the extent to which the breakthroughs in gene therapy and gene editing will be applied, explained Scadden, who is a practicing hematologist at MGH and chairman of Harvard’s Department of Stem Cell and Regenerative Biology.
Animals that received the antibody treatment had a broad ten-day window within which they could accept a bone marrow transplant, and individuals that did not receive a bone marrow transplant were able to fully recover without adverse effects. Furthermore, mice suffering from sickle cell anemia were successfully transplanted using the antibody method and cured of their anemia. Should the same hold true for humans, what amounts to months of recovery in a hospital bed may be replaced by an outpatient procedure, and a failed transplant would not be fatal.
“If this approach works in humans, it will really change the conversation that providers have with patients,” Scadden said, especially for those “who have these underlying genetic disorders and for who the new gene-editing and gene therapy techniques are being developed.” The scientists are now trying to identify antibodies that would be effective in humans, and a company has been formed to move the work towards translation and determine which models are most useful in a preclinical setting.
“It brings precision medicine into the area of transplant in a way that hasn’t been there and is needed,” Scadden said.