Frequently asked questions

Answered by a team member at Sickle Cell Disease Association of Illinois

• What is your mission?

  MISSION STATEMENT
  Sickle Cell Disease Association of Illinois’ (SCDAI) primary mission is to enhance the quality of life for people with sickle cell disease and their families. To effectively achieve this goal, SCDAI acts as an advocate for improved healthcare and services for sickle cell patients by educating and informing the community through outreach programs.

  https://www.sicklecelldisease…
  https://www.sicklecelldisease…

• How are donations used?

  Donations to SCDAI are used to support the individuals with Sickle Cell Disease in the state of Illinois. Donations allow SCDAI to identify individuals with Sickle Cell Disease and provide programming, events, outreach, screenings, education, emergency assistance, counseling, summer camp and many other supportive services as needed by the Sickle Cell community.

  https://www.sicklecelldisease…
  https://www.sicklecelldisease…

• What can be done with a $100 donation?

  A few examples (including but not limited too) of What A Donation provides to SCDAI:
  
  $25: Provides individuals with sickle cell and their loved ones with educational materials that contain up-to-date information on their disease and the support to help them make informed decisions about their care options.

  $50: Allows SCDAI to offer a physical or online Support group where a connection, comfort and the opportunity to share experiences among individuals with Sickle Cell Disease and their family members.

  $75: Provides a connection to multiple training opportunities for individuals with Sickle Cell Disease and parents of children with Sickle Cell Disease.

  $100: Provides a Gift Card/New Toy to 5 youth with Sickle Cell Disease.

  $250: Provides a portion of Emergency/Bereavement assistance to one family in need.

  $500: Sponsors one youth with Sickle Cell Disease, to participate in “Bright Horizons” overnight summer camping experience.

• What progress has been made already thanks to your donors?

  Dedicated Donors and volunteers are the backbone and mere existence for the Sickle Cell Disease Association of Illinois.

• What is the history of your organization?

  In 1971 the Sickle Cell Disease Association of Illinois (SCDAI) was founded under the name Midwest Association for Sickle Cell Anemia (MASCA). As a founding member, SCDAI is a part of the Sickle Cell Disease Association of America (SCDAA), a 57 member community-based membership organization, in over 300 communities nationwide and Canada.

  ​Heres a few of many Accomplishments:
  Since 1972 hosts an annual Toy Drive and Holiday Celebration. Providing gift cards, gifts and holiday cheer for over 5000 youth ages newborn-17 years of age with Sickle Cell Disease.

  Since 1974 hosts an annual healthy living competition on Chicago’s Lakefront involving, walking, jogging, running and biking. The Walk-Jog-Bike-A-Thon or WJBAT for over 10,000 participants.

  Since 1983 SCDAI has sponsored and taken more than 3,000 youth ages 7-17 with Sickle Cell Disease to an overnight summer camping experience called “Bright Horizons Summer Camp”.

  Since 2002:
  Petitioned Governor James Thompson to proclaim September as “Sickle Cell Awareness Month in Illinois”

  Launched a payroll deduction and direct contributions program, which has expanded to include the city of Chicago, cook county, the board of education and the United States government.

  SCDAI is a member of the Community Health Charities of Illinois, which represents over 50 other health agencies

  Awarded and continues to maintain a HRSA federally Funded Sickle Cell Disease Newborn Screening Program.

  Maintains a Memorandum of Understanding with the Illinois Department of Public Health (IDPH) Newborn Screening Program. Through this agreement, SCDAI educates, counsels and follow(s) up with parents of infants and individuals testing positive for abnormal Hemoglobinopathies in the state of Illinois.

  Organized & host the first Sickle Cell Disease conference in Chicago. Our annual Management of Sickle Cell Disease Conference for over 1, 500 health professionals and individuals living with Sickle Cell Disease throughout the state of Illinois.

  Host an annual Golf Outing for over 650 golfers to increase sickle cell awareness within the golfing community.

  Since 2010 in partnership with the University of Illinois-Chicago (UIC) Sickle Cell Center’s Outreach Nurse SCDAI has provided over 500 families with Free Hemoglobinopathy screenings.

  Since 2011 partnered with the Bundle of Joy Diaper Bank providing a diaper program where over 15,000 diapers have been distributed to families in need.

  Since 2013 hosts an annual fun and competitive Raising Sickle Cell Awareness 1 Pin at a Time Bowling FUNdraiser. Increasing sickle cell awareness within the bowling community.

  Since 2013 hosts Chronic Disease Self-Management Training for adults with Sickle Cell Disease. “Living a Healthy Life with Chronic Conditions”, a free workshop series designed to help understand, cope and embrace the day-to-day struggles of living with a chronic illness. Providing patients with skills to help manage their sickle cell disease, learn skills to cope with problems such as: frustration, fatigue and pain, communicate effectively with family and health professionals, and creating action plans to better manage their lives.

  ​Since 2014 hosts Care Coordination Trainings for parents of children with Sickle Cell Disease. The Care Coordination: Empowering Families curriculum provides parents with the skills, knowledge and resources as a framework needed to coordinate care for children with complex needs in partnership with a culturally competent medical home. Through this partnership, SCDAI now has four certified training facilitators and plans to conduct the training for families of children with sickle cell disease across the state of Illinois.

  ​Since 2015 Incorporated and hired Community Health Worker’s to work specifically within the Sickle Cell Community to increase sickle cell patients access to care and quality of care.