This week’s organization in the spotlight is the Have A Heart for Sickle Anemia Foundation. Established in 1990 by the late Linda Collins it has continued on its vision to be a strong advocate and make a difference in improving the quality of life for those affected by sickle cell disease. With a web page devoted to answering various sickle cell related questions along with youth programs to ensure young patients grow knowledgeable about their disease this organization continues to develop programs to help families cope and increases the public’s overall awareness on sickle cell disease.
How long has your organization been involved in serving people with sickle cell?
Have a Heart for Sickle Cell Anemia Foundation (HAH), formerly known as Sickle Cell Anemia Research and Education Fund (S-CARE) was established in 1990 by the late Linda Collins.
How did you become involved with sickle cell as an organization? What lead you start this organization? How has it grown or changed over time?)
HAH was established in 1990 by the late Linda Collins, (who had sickle cell) with the purpose of advocating for those individuals affected by sickle cell disease (SCD) and to provide a means for people to become knowledgeable about SCD. Initially HAH then S-CARE was devoted to sickle cell research, education and awareness, however after realizing the challenges sickle cell youth face S-CARE reorganized and was renamed HAH and currently focuses on programs that enrich the lives of youth living with SCD, parental/family support, as well as educating the general public about SCD.
Tell us about the different ways in which you are helping sickle cell patients and their families cope and what kinds of assistance do you offer for the sickle cell patients through your organization?
HAH’s comprehensive Youth Development program includes a tutorial component, a vocational /career assessment component, and parental advocacy seminars. The activities of these components are structured to enhance self-esteem and facilitate the development of skills required to successfully cope with their chronic illness. Our program engages the family into the education and support process and the activities include not only the patient but their siblings, and their parents/guardians. The group meets two Saturdays a month where they are tutored, participate in craft, and talk about issues of concern. On occasion, field trips, consistent with the year’s goals and objectives are taken.
Since sickle cell can interfere with one’s education what kind of support is giving to insure that people are able to succeed academically?
With the purpose of supplementing the curriculum being taught in the youths’ schools, HAH tutorial program focus on reading, comprehension and math skills. HAH’s Youth Developmental Model integrates the arts and horticulture into the learning process. One project that was done by the youth was a documentary video “Sickle Cell Disease and Bullying” which is on YouTube http://www.youtube.com/watch?v=qVZyTkUEw78.
What role does the support from the community play in helping your organization and what is your biggest challenge?
The community plays a big role. HAH’s volunteers as well as board members are recruited from the community. Our biggest challenge is securing funding.
Longevity can be a tough task for a nonprofit organization how have you been able to raise money to keep the organization running through the years?
HAH is a self-sustaining organization that has supported itself through community contributions, fundraising, and various grants.
What are your organization plans and goals for the future?
Future plans include enhancing the program, increasing our outreach efforts, and securing funding so we are better able to help more youth reach their potential in spite of sickle cell disease.
How can someone help who may or may not be in the Chicago, Illinois?
Donations always help and we are in need of committed board members.
Where can you be found and how can we contact you?
47 West Polk St. Suite 100 – 130
Chicago, Illinois 60605 firstname.lastname@example.org
Are there any upcoming events that you would like to tell us about?
June 28, 2014 is our annual Sickle Cell Awareness Ride (SCAR) sponsored by the African American Firefighters & Paramedics League
I would personally like to thank Bonnye Johnson Board President of Have a Heart for Sickle Cell Anemia Foundation for taking the time out of her very busy schedule to provide me with this interview. Your time and energy is valued along with your continued support for the sickle community keep up the great work!
Bonnye Johnson MS. RN
UI Sickle Cell Center
Have A Heart Board President email@example.com