Parker Todd, 13, of Queens, was joined by 45 other sickle cell advocates, doctors, nurses and pharmaceutical representatives in Albany to champion a new sickle cell bill.

Many patients on a panel were able to share their stories with lawmakers educating them on the impact the disease has on hundreds of thousands of people who suffer from the illness.

The group took a tour of the state capital and was introduced on the Assembly Floor. The sickle cell treatment bill is currently pending in the NYS Assembly and Senate. Parker and the other advocates hope the advocacy day has made progress so the bill will be fully funded and approved.

For more than half-a-century, an organization for African-American women has quietly served those less fortunate in cities across the globe. Recently, the women of The Links, Incorporated partnered with St. Jude Children’s Research Hospital to address sickle cell disease.

Children diagnosed with sickle cell anemia face unique health challenges. To help these children live long and crisis-free lives, The Links Foundation, Incorporated presented its 2018 Legacy Grant to St. Jude.

The million-dollar gift will help the hospital continue working with patients diagnosed with the inherited blood disease.

St. Jude’s founder, Danny Thomas, envisioned a place where children would get the care they needed to survive life-threatening diseases. Research and treatment of sickle cell disease began when the hospital opened in 1962.

The California Institute for Regenerative Medicine (CIRM), California’s Stem Cell Agency, today invested almost $10 million in stem cell research targeting sickle cell disease and cancer at its February Board meeting.

The CIRM Board awarded $5.74 million to the City of Hope to fund a Phase 1 clinical trial testing a stem cell-based therapy for adult patients with severe sickle cell disease (SCD). SCD refers to a group of inherited blood disorders that cause red blood cells to take on an abnormal, sickle shape. Sickle cells clog blood vessels and block the normal flow of oxygen-carrying blood to the body’s tissues. Patients with SCD have a reduced life expectancy and experience various complications including anemia, stroke, organ damage, and bouts of excruciating pain.

Global Blood Therapeutics, Inc. today announced the completion of a planned review of Part A of the Phase 3 HOPE (Hemoglobin Oxygen Affinity Modulation to Inhibit HbS PolymErization) Study, which is evaluating voxelotor for the treatment of sickle cell disease (SCD). On the primary endpoint (the proportion of patients with greater than 1 g/dL increase in hemoglobin versus baseline), a statistically significant increase was demonstrated with voxelotor at both the 1500 mg and 900 mg doses after 12 weeks of treatment versus placebo.

The independent Data and Safety Monitoring Board (DSMB) completed its most recent clinical safety review in May 2018 and did not identify safety concerns with voxelotor at either dose level across all patients dosed in the ongoing SCD clinical program, including adult patients in the Phase 3 HOPE Study and adolescent patients in the HOPE-KIDS 1 (GBT440-007) Study. The DSMB supported the initiation of dosing in children as young as age 4.

Domino's has lost its O's. No A’s or O’s for the New York Yankees. No B in IBM?

Major brands are losing the letters A, B and O in their logos to support the Red Cross’s new blood drive starting Monday.

“Without A, B and O, we can’t save anybody,” the Red Cross says. “Each year, fewer and fewer people are donating blood.”

The Red Cross is always short of blood and looking for new ways to get people to donate. Only about 38 percent of the population is even eligible to give blood, and only about 10 percent of those people — that’s 3 percent of the population — give blood yearly.

There are unexpected things that happen that you really can’t prepare for.

Away from home for the first time attending a two-week summer camp, Johanne Konan was expecting a big hug from her two daughters – Elisa and Ines -- on their return.

“When the bus pulled up, I thought they would have come running to me, saying ‘We missed you mom and we love you’,” said the Ivory Coast immigrant. “Instead, the first words out of their mouths were, ‘Can we go back’. I was stunned.”

After the initial shock wore off, Konan and George Ofori were relieved to know that their girls – they were born with sickle cell – relished their time at Camp Jumoke.

Crispr Therapeutics AG plunged after the gene-editing company said a planned trial of its treatment to help people with sickle-cell disease was being put on hold by U.S. regulators.

Crispr is developing the therapy with Vertex Pharmaceuticals Inc., and the trial had yet to begin. The companies said in a statement Wednesday that the Food and Drug Administration placed a halt on the experiment until the agency could get more information from the companies.

If you’re familiar with the American Red Cross blood service, you have likely heard the same statistic: that 37 percent of the population is eligible to donate blood, but only 10 percent ever will. When working with the millions of donors and volunteers worldwide, it is apparent how diverse is the group of individuals who really dedicate their time. Behind every participant are real experiences that push them to give back to their community.

On June 9, a blood drive was held honoring Charles R. Drew (1904-1950), the first African-American Red Cross medical director. The drive was an encouragement for new and infrequent donors to give. It was sponsored by a variety of Greek Letter Organizations, as Drew was a member of the Omega Psi Phi Fraternity. Many of their present members went beyond volunteering and decided to donate. 

Cayenne Wellness Center’s Annual Sickle Cell Disease Educational Summit is a three and a half-day seminar designed to address the multi-factorial aspects of sickle cell disease and sickle cell awareness and education. The 15th Annual Hybrid Sickle Cell Disease Educational Summit is designed for health care professionals, providers, educators, social workers, students, individuals living with sickle cell disease and their families, and the community at large.

The purpose of this educational activity is to strengthen the participant's knowledge base about sickle cell disease and sickle cell trait through lecture, discussion, and sharing of current and future treatment regimens. In addition to presentations on the pathophysiology, complications, management, and treatment of sickle cell disease, the seminar will present the latest scientific and clinical information related to the disease.

Date:

September 13-16, 2023

The Faculty of Dentistry, Medicine and Pharmacy in conjunction with Sickle Cell Foundation of Alberta invites you to join us for the 2018 (Re) imagining Health: Sickle Cell Anemia & Thalassaemia: An International Biomedical-Sociocultural Conference.

The purpose of the conference is to bring together multiple voices to support and build inclusive an equitable teaching and learning environments for medical staff, sickle cell disease patients, their families, first responders the public and other stakeholders. The event will be targeted towards patients and their families, physicians, surgeons, researchers and other medical practitioners within the community committed to finding a cure for Sickle Cell Anemia and more knowledge of the continued effects of sickle cell anemia trait.

Date:

November 16 – 17, 2018

Venue:

Edmonton Clinic Health Academy, University of Alberta

11405 87 Ave NW, Edmonton, Alberta, Canada

This event has ended.