Sickle Cell Disease Association of America announces new officers and updates on their recent convention

Sickle Cell Disease Association of America, Inc. Appoints New Additions to National Staff

[BALTIMORE, MD – October 27, 2016] The Sickle Cell Disease Association of America, Inc. (SCDAA) (, a not-for-profit organization dedicated to advocating for, and finding better programs and treatments for individuals living with Sickle Cell Disease and Sickle Cell Trait, announce the hiring of Grace Kolawole, CPA, as Controller, Ola Fajobi, MSPH, CPH, as Data Manager, and Lauren Whiteman, MPH, CPH, as Community Engagement Manager.

Grace Kolawole brings more than 15 years of experience to SCDAA. She has worked with numerous national nonprofit organizations as a Controller, Senior Accountant and Staff Accountant including the Christian Broadcasting Network, the America Federation of Government Employees and, most recently, the headquarters of the Concerned Black Men National office. Ms. Kolawole is a Certified Public Accountant with extensive federal grants management experience as well as notable expertise with GAAP and A-133 audit guidelines. In her leadership role, she will be responsible for daily management of SCDAA fiscal operations and related controls. Ms. Kolawole holds a B.S. from Frostburg State University and a B.A. from Howard University.

Ola Fajobi, MSPH, CPH, brings nearly a decade of experience in research from both Morgan State University and John Hopkins Bloomberg School of Public Health. As Data Manager, Mr. Fajobi will provide oversight of SCDAA’s data management efforts in support of National initiatives. He will also supervise the newly implemented SCDAA Data Center, recently established in the National Office. Mr. Fajobi holds a Master’s of Science in Public Health from Johns Hopkins Bloomberg School of Public Health and is currently pursuing his PhD in Public Health at Morgan State University. He holds a certificate in Health Emergencies in Large Populations (HELP) and Humanitarian Assistance.

Finally, SCDAA welcomes Lauren Whiteman, MPH, CPH, as the Community Engagement Manager. Ms. Whiteman brings more than ten years of experience to SCDAA and has worked with the Hispanic Serving Health Professionals/ Cancer Prevention and Control, The Memorial Regional Hospital and, most recently, John Hopkins School of Medicine. Ms. Whiteman has notable experience in developing health worker training curriculum’s as well as HRSA and RuSH grants. At SCDAA, she will work with Community Health Workers (CHW’s) under the HRSA Grant to engage with CHW’s and Community Based Organizations. Ms. Whiteman holds a Master’s of Public Health in Policy and Programs from the University of South Florida and is certified in Public Health.

About SCDAA:  The Sickle Cell Disease Association of America, Inc. (SCDAA) serves as the nation’s only organization working full time on a national level to resolve issues surrounding SCD and trait. Since 1971, the organization has been on the forefront of improving the quality of health, life and services for individuals, families and communities affected by Sickle Cell Disease and related conditions. In addition, SCDAA has been and remains instrumental in promoting the search for a cure for all people in the world with Sickle Cell Disease. SCDAA is a section 501(c)(3) organization.

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Media Contact: Brittney Hayes,, (410)528-1555

Sickle Cell Anemia: Stem Cell Gene Therapy – A Patient’s Perspective

Nancy Rene, a patient advocate for the Sickle Cell Foundation of California, spoke to the CIRM Governing Board at the “Spotlight on Disease Team Awards: Stem Cell Therapy for Sickle Cell Anemia” seminar. Through photos and stories, Rene described the impact of sickle cell anemia on her grandson’s life. She also spoke about the importance of support services for sickle cell patients and continued research for a cure. Rene was introduced by Bert Lubin, a CIRM Governing Board member and president of the Children’s Hospital and Research Center Oakland.

Axis Advocacy Board Members Cecil McLinn and Nancy Rene on Sickle Options website’s Video Library

Axis Advocacy Board Members Cecil McLinn and Nancy Rene on Sickle Options website.

Check out the Sickle Cell Options video library.

A Patient Advocate’s Take on Sickle Cell Disease: The Pain and the Promise

Sickle Cell Disease: The Pain and the Promise

By Nancy M. Rene, co-founder, Axis Advocacy

The Disease

Sickle Cell Disease is a group of inherited red blood cell disorders. It is the most common genetic disease in the US. Close to 100,000 Americans have sickle cell disease.  Although it affects persons of African descent, it can also be found in Latino families and families from the Middle-East and India. World-wide there are at least 20 million people with the disease.

Normal red blood cells are round like doughnuts, and they move through small blood vessels in the body to deliver oxygen. Red blood cells in the person with sickle cell disease become hard, sticky and shaped like sickles. When these hard and pointed red cells go through the small blood vessels, they clog the flow and break apart. This causes pain, inflammation and organ damage.

The Pain and the Promise

In the last 30 years the United States has made great progress in treating sickle cell disease.  All states now have newborn screening and most children are living to adulthood. However, many children with SCD don’t receive important services to prevent serious complications from the disease.

Unfortunately, according the the American Society of Hematology,the mortality rate for adults appears to have increased during the same 30 years! Patients with SCD experience long delays in the ER, and are often accused of being drug seekers. Once admitted to the hospital they are confronted by medical staff with little understanding or empathy. Research from Dr. Michael DeBaun found that adults with this disease lack access to a primary care doctor who is knowledgeable about sickle cell.

The biggest Pain for those with sickle cell disease does not come from the disease itself but from treatment by the medical community.  When, for most people, going to the hospital represents a place to get help and relief from the burdens of a challenging disease, those with sickle cell see going to the hospital as going into battle. They “gear up” with copies of medical records and NIH guidelines, they make sure they have a diary to record inappropriate remarks from medical staff, they ask a friend to come along as an advocate to help them withstand the implied racism and institutional bias with which they are confronted. Even when new hospitals or clinics are built, they often do not live up to expectations, offering no emergency support or 24-hour access.

The promise of course comes from the diligent work of researchers and clinicians who run model programs.  Bone marrow transplants, while limited in use, have actually cured a number of young people, saving them from pain and organ damage that await their adult years. Pharmaceutical companies are completing clinical trials on several drugs that can reduce the symptoms of sickle cell at the molecular level. These drugs could greatly reduce the effects of the sickle cell crisis which often results in a lengthy hospital stay.

Stem cell research, while moving slowly, can be the holy grail of medical practice, curing many of the 100,000 Americans with sickle cell.  A cure would lead to avoiding the dreaded ER, being free of pain and organ damage, living a healthy life, and having children without worrying that they too would be born with this disease.

What is missing is linking research to clinical practice.  It is clear that the CDC, FDA and NIH have finally understood this missing piece.  The NIH published an extensive report, Guidelines for the The Treatment of Sickle Cell Disease, in 2014. NIH convened the 10thAnnual Focus on Sickle Cell that brought researchers, clinicians, and other leaders together to make presentations on their work in sickle cell. The Sickle Cell Research Foundation convened an outstanding medical conference in Florida that again brought leaders together to gain knowledge from one another. ASH, the American Society of Hematology, is planning to launch a Sickle Cell Initiative this month.

We in the sickle cell community, patients, care-givers, and advocates, feel that we have finally got some big guns in this fight. Once doctors in all communities understand this disease, once they are aware of their own implicit bias and that of their institutions, there should be improvement in the treatment of people with this painful, debilitating illness.

ER Survival Kit