CHILDRENS SICKLE CELL FOUNDATION
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Mission Statement
The Children's Sickle Cell Foundation, Inc. provides quality programs and services for children and young adults with sickle cell disease and their families to help them face the educational, social and economic challenges caused by the disease. Our commitment to community education, outreach, awareness and raising funds for research are natural extensions of this mission. We believe that a universal cure is coming soon. We want everyone to say that they are "Living Well with Sickle Cell" while we work and wait for a cure!
About This Cause
Children's Sickle Cell Foundation, Inc. was founded in 2002 by Andrea Williams, a mother of a child with sickle cell disease who wanted to help children and families like hers face the educational, social and economic challenges caused by the disease through an integrated and collaborative approach with hospitals and community partners to raise awareness and funds to support a cure for sickle cell disease. We provide year round support through various family centered programs and events focused on the successful management of disease, 'Living Well with Sickle Cell". The Educational Advocacy and Support Program, our nationally recognized best practice model has been replicated in 3 states. Our success includes increasing the average grade point averages by nearly 2 full points and decreasing absences by more than 2 full weeks! We have not had a single high school drop-out in 3 years! We have partnered with the Greater Pittsburgh Literacy Council and APAR, Edu to provide tutorial services for adults and children, respectively. We focus on innovative solutions that remove barriers for children to participate in activities that their peers without disease easily participate in. For example, our "Learn2Swim" program removes the barriers to swimming with sickle cell. Nine out of 10 children of verbal age answered the question, "How does sickle cell affect your life?" with this answer, "I can't swim.". Swimming is a wonderful way to stay active, fit and healthy for all kids. The barrier is that children with sickle cell disease can not swim in cold water. The pool must be heated to at least 91 degrees F. They should have a warm shower waiting and lots of warm towels on hand to completely dry off. We partner with a community agency to use their heated pool, monitor the temperature and provide the warm shower and towel needs, with lunch and beverages to help keep them hydrated. This program has removed the barrier to safe swimming for our CSCFKids and their siblings! One child in his exuberance over passing his deep water swimming test shared with me that once he had been told that he couldn't swim, now that he can, what else can he do? It has raised the ceiling of his expectation and removed his limits! There is no greater feeling the knowing that we helped make that happen. Our monthly family support outings provide a family centered activity available for the entire family. Our families have participated in sports team events, theater, shows, and museums. Many of our families would not have the financial ability to provide such experiences. We are happy to partner with Tickets for Kids for our monthly outings. We provide economic assistance to families through our Back2School Bash and Season2Give Programs. Each of these annual events are spectacular. For the Back2School Bash, we rely on our community partners to donate their time, talent and treasure to make certain that each of our CSCFKids and their siblings have what they need in their book bag at the start of the year to succeed in school. During the Season2Give, our partners have toy raisers, fund raisiers and donate their time to our Santa's Workshop. It's free to our CSCFKids and their siblings who simply "shop" free for each of their siblings. Our volunteers gift wrap each gift and send them home with their parent or guardian. One year one of our moms, a mother of 3 and was recently laid off her job came to me overwhelmed at how the program worked and that it had provided a gift from each sibling to the other, she hugged me and whispered in my ear, " This is our Christmas.' My eyes filled with tears. The strength of CSCF, Inc. is in our partnerships. We have more than 25 community partners, most of them 12 or more years! We developed a wellness program called SMASH Sickle Cell, where SMASH is an acronym for Stay Motivated, Active, Smart and Healthy! We hold weekly sessions combining a coping and educational session with physical activities that the whole family can enjoy. We hope that all of our participants can say that they are "Living Well with Sickle Cell"! Through this dynamic program, we support parents of newly diagnosed children with the New Parent Program which is a series of educational sessions and toolkit; handbook, thermometer and medicine dropper. The handbook outlines what they will need for their child during the first 5 years. When it's time to transition young adults from the pediatric hospital to the adult center, we provide a Transition Program, a 6-week program where they learn life skills, coping and put their skills to the test while filling their "Living Well with Sickle Cell Passport". When they complete the program, they are prepared to navigate the often complicated world of adult centered care with confidence. Our outreach efforts are exemplary. We are making the largest impact in Western PA and lead the Pennsylvania Sickle Cell Disease Providers Network at the state level as they design new tools and outreach strategies to ensure that patients have access to disease modifying therapies, such as Hydroxyurea. Our website is a trusted resource for families and their networks of support to learn about sickle cell disease and keep up with the latest information in sickle cell disease. The Living Well with Sickle Cell Disease and Trait Community is the first online social media platform for everyone! For patients, families, physicians and other medical professionals. Collaboration and support are keys components of this community so whether you have sickle cell disease, trait or provides care for someone who does, this is the place to learn, share and find support. We hope that this has given you the opportunity to get to know us. For more information please visit our website www.cscfkids.org and be sure to join the community at livingwellwithsicklecell.org We'd love to meet you there! Please call 412-488-2723 to speak with someone regarding any of these programs and services. Thank you for your time.