SICKLE CELL DISEASE IN LIBERIA's Fundraising Page

ABOUT SICKLE CELL DISEASE

Sickle cell disease (SCD) is an inherited blood disorder, causing chronic anemia, severe recurrent episodes of pain, increased susceptibility to infection, and strokes in children and adults. About 1 in 60 infants in sub-Saharan Africa is born with SCD.

Life expectancy for children with SCD is nearly the same as people without SCD in the US and other Western nations. Unfortunately, in Africa, where most people with SCD live, up to 90% of children with SCD do not survive beyond their fifth birthday.

Low-cost, high impact interventions such as testing newborns to make the diagnosis early, providing penicillin, and providing immunizations have changed the course of disease for children with SCD in the US. Let?s work together to do the same in Liberia!

WE'VE ALREADY BEGUN!
In 2012, with the support of the Thrasher Research Fund, Venee Tubman, MD, MMSc started a research study to establish the first pilot newborn screening program at one hospital in Monrovia. Growing from that effort:

• We have screened over 5000 infants
• We have more than doubled the number of children with SCD who are receiving regular care
• We raised awareness in the community with our first Sickle Cell Awareness March
• We are partnering with local Liberian Sickle Cell non-profits to organize community education sessions
• With donations from the Association of Public Health Laboratories and from Perkin Elmer, Inc, we are set to expand laboratory capacity for sickle cell testing in Liberia to several other hospitals
• Continued to provide care to our patients even during the recent Ebola outbreak

• We will increase the availability of health care for patients with SCD, including:
•  - supporting the expansion of newborn screening
•  - increasing the availability of medications
•  - offering additional training to local health care providers

• Screening all infants at one hospital for one year (~10,000): $15,000
• Daily penicillin for 100 children for one year: $10,000
• Two training workshops for local healthcare providers: $2000
• One family education day to raise awareness: $1000
• Hydroxyurea for one patient for one year: $750
• A care package (toiletries, transportation assistance, phone card) for a parent during a prolonged hospital stay: $10

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