The Advocacy Group for Adults with Sickle Cell Anemia (AGASCA) is currently an online support group, however we are taking our support to the streets, through the formation of the SCD Soldier Network. The mission of the network is to provide a national registry of volunteers dedicated to supporting those who battle Sickle Cell Disease. We are currently in the formation stages, so we are in need of your financial support.
The SCD Soldier Network will pursue partnerships with organizations that were formed to provide services to those with SCD. That includes the National and Local Chapters of Sickle Cell Disease Association of America (SCDAA), patient formed support groups, Infusion Centers and other medical and social service entities. Our primary goal is to bring greater awareness to the battle that those affected by this disease face on a daily basis. Due to advancements in the treatment of SCD more people are are living beyond childhood with the blood disorder. Now that we are living longer, it is time for us to stand up and be heard.
For those of you who are not familiar with Sickle Cell Disease, it is a hereditary blood disorder that affects the hemoglobin found in the red blood cells. Due to a mutation in the hemoglobin gene, the blood cells take on a crescent moon or sickle shape, which prevents them from passing through the blood vessels wih ease. When ever these blood cells get stuck, they block the flow of oxygen to vital organs causing long-term damage and extreme pain known as "pain crisis". More information about Sickle Cell can be found online at http://sicklecell.howard.edu/information.htm
We are applying for 501(c)(3) non-profit status, however as we proceed in forming the Network all of the people involved have been using their own funds, which are limited. Your donations will go a long way in helping us to cover the cost of bringing awareness to this project. We really don't want our volunteers to have to be out of any money when supporting events, however a lot of the organizations are hosting events that are fundraisers for them. To volunteer they don't require money, however in order to participate most of the time there is a cost involved. We would love to be able to give stipends to those who can't afford to participate but would love to if there were no cost to them. That is the biggest challenge that we face right now. Your help in sponsoring those people could have a major impact. (for example a walk-a-thon is being held and the registration fee is $25.00 and a family of limited means would love to walk and show their support, but they can not afford the $100 it would cost for their family to participate). Having resources to support the events that we are asked to support should come much easier after we finalize our non-profit paperwork, but until then we are counting on folks like you.
I am providing several links in order to familiarize you with the SCD Soldier Network. I would also like to extend an invitation for you to join us by becoming a soldier yourself.
Thank you for taking the time to view this campaign and remember that anything that you give will be greatly appreciated.
Phyllis Zachery-Thomas
Sickle Cell Advocate
Links To Our Websites:
SCD Soldier Network: http://scdsoldiernetwork.com
AGASCA Online Support Group: http://bit.ly/viEtV
SCD Soldier Anthem: http://bit.ly/4OycCF
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