During Sickle Cell Awareness Month make a pledge to start a conversation with co-workers, neighbors and friends about the importance of knowing their sickle cell status.
Statistics on Sickle Cell Disease continue to rise because no one IS willing to start a conversation. How many people do you know have talked about starting a family, but never considered the importance of knowing their Sickle Cell status?
Many states now require children to be screened at birth for Sickle Cell disease but as adults, no one remembers or considers the importance of knowing if they carry the Sickle Cell trait?
If both the mother and father have the Sickle Cell trait, they run the risk of having a child born with Sickle Cell. This is not to put blame on anyone, but rather encourage our community to get educated about SCD.
The Jewish community lowered statistics on Tay-Sachs disease by 95% through vigilant screening programs and a commitment to educate people. Their plan enlisted the support and infrastructure of the Jewish community to host screenings at synagogues and community centers. The support of Rabbi’s was also a big factor in the success of their efforts.
It is our goal to understand why African American and Hispanic communities are unwilling to do the same. How can the Sickle Cell Community obtain support from churches and ministers, civic organizations and the medical community to get everyone to check their Sickle Cell status?
It is so important to start conversations about Sickle Cell disease so that future generations will never have to worry about ” breaking the Cycle.”
Tell us what you think. Read the article about how the Jewish community beat Tay-Sachs disease and let us know if you think we can do the same for Sickle Cell Disease ?
A new research project is looking for teens 13 – 17 years old to assist with the development of Pinpoint, a new tablet app that helps young Sickle Cell Disease (SCD) patients assess and talk about their pain.
Click link below for more information:
Pinpoint Usability Flyer
World Sickle Cell Day is on 19th of June. Wearing red for sickle cell day was established by the United Nations General Assembly in 2008, to raise awareness about the sickle cell disease globally. Sickle cell affects us all directly or indirectly and it has affected and continues to affect many families who have lost family members as a result of the condition. Contrary to common knowledge, people in other countries are also affected like India, Saudi Arabia, Turkey, Arabic Peninsula, Brazil, Surinam, Guiana, Southern Italy, Greece. Studies have shown that Nigeria has the largest population of people with Sickle Cell Disease in the world, and with over 150,000 Nigerian babies born with sickle cell every year.
With proper care and treatment, persons with Sickle Cell can lead a relatively good quality life.
It is important that everyone knows their status before starting a family.
Get a jump on your Father’s Day shopping and help support a good cause!
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
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/