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Organization in the Spotlight: Baton Rouge Sickle Cell Anemia Foundation

Organization in the Spotlight: Baton Rouge Sickle Cell Anemia Foundation

It is my honor and pleasure to bring to you our first organization in the spotlight the Baton Rouge Sickle Cell Anemia Foundation. Established in 1974 this longstanding organization has been devoted to supporting those whom live with sickle cell and their families by providing numerous services and assistance programs. Through advocacy and education it continues to raise the level of awareness on sickle cell while continuing to serve as a staple for change in the sickle cell community.

How long has your organization been involved in serving people with sickle cell?

This year (2014) marks the 40th year that Baton Rouge Sickle Cell Anemia Foundation has been serving clients in the state of Louisiana.

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?

Through focus group with our clients and their families we have established are client service programs that are free to anyone in our service area free of charge.

The services established are:

Coping and Connecting                                                                                                                                                                                                                           A series of client support groups.  Speakers as well as open discussion on sickle cell disease, related illnesses, social services and coping skills.  Adult   and caregivers meet monthly. Children and teens meet quarterly.

Circle of Friends                                                                                                                                                                                                                                        A sitting service that provides a trained sitter for hospitalized clients who are experiencing sickle cell episodes.

Fountain of Health                                                                                                                                                                                                                                    A hydration program which allows clients to receive sports drinks to assist in maintaining their hydration.

Infant Care Program                                                                                                                                                                                                                                A program to educate new parents and to help monitor the development of newborns diagnosed with sickle cell disease.

Medicaid Application Center                                                                                                                                                                                                       Medicaid applications are accepted Monday-Thursday by appointment.

Sickle Cell Testing and Trait Counseling                                                                                                                                                                               Sickle Cell Testing:  Every third Wednesday, by appointment only.                                                                                                                         Trait Counseling Program                                                                                                                                                                                                   Counseling is provided to individuals who have the trait or the disease.

Emergency Assistance Program                                                                                                                                                                                       Providing one time financial assistance for emergency situations (i.e. rent, utilities).

Prescription Drug Vouchers / Co Payments Vouchers                                                                                                                                             Program provides up to $100.00 for clients who are uninsured.  Provide insured client co-payments up to $50.00.

Medical Durable Program                                                                                                                                                                                                                     A co-payment of $100 per year is provided to clients for the purchase of wheelchairs, crutches, etc.

Healthcare Vouchers                                                                                                                                                                                                                               A program that provides assistance with medical, dental, vision exams and eyewear.

Since sickle cell can interfere with one’s education what kind of support is giving to insure that people are able to succeed academically?

Academic Partnership                                                                                                                                                             Tutors are provided to clients and children of adult client; assisting with educational plans; picking up assignments due to hospitalization; and financial assistance is available for children clients participating in the program for summer school. Please contact the Foundation to schedule tutors or request education assistance.

Aerius Taylor Scholarship                                                                                                                                                                                                                    A $500 award is granted to a sickle cell client who graduates from high school with a 2.0 or better and is enrolling in a college, university or trade school.

What role does the support from the community play in helping your organization and what is your biggest challenge?

We struggle with public support due to lack of overall education on sickle cell and the devastation of the disease.  However we do have a core group of the community that understands.  Our challenge is to increase the education of the community so that they will understand the need for their support for our citizens living with sickle cell disease.

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?

Raising money is a huge task yearly.  Just like the disease it is truly unpredictable.  It seems like you have to always wait on what is left over.  My goal is to make our organization respected and competitive with all nonprofits in our state. Fundraising is always “on” never missing an opportunity from placing coin jugs in businesses or strengthening a signature event.

How can someone help who may or may not be in the Baton Rouge, LA area?

A person can assist our organization several ways. Support our social media efforts by liking us on Facebook (Baton Rouge Sickle Cell Anemia Foundation, Inc.) or following us on Twitter @BRSICKLE.

Financial donations can be made through our website with a service fee taken out of the donation—or they can mail a check directly to the organization (no service fees would be taken out of the donation).

Where can you be found and how can we contact you?

2301 North Boulevard Baton Rouge, LA 70806                                                                                                             225.346.8434 (phone) 225.334.0628 (fax)                                                                                                                                     E-mail: brscaf@brscaf.org                                                                                                                                                         Check us out on the web: www.brscaf.org

Are there any upcoming events that you would like to tell us about?

Client Support Group Meetings                                                                                                                                                                                            January 15, 2014                                                                                                                                                                                                                     February 19, 2014                                                                                                                                                                                                                          March 19, 2014                                                                                                                                                                                                                                   May 21, 2014                                                                                                                                                                                                                                       June 18, 2014                                                                                                                                                                                                                                         August 20, 2014                                                                                                                                                                                                                           September 17, 2014                                                                                                                                                                                                                     October 22, 2014                                                                                                                                                                                                                           November 12, 2014                                                                                                                                                                                                                               *All meetings are held on the Third Wednesday, starting at 12:00 noon with the exception of the November meeting (Second Wednesday).

Client Events                                                                                                                                                                                                                                            Easter Family & Friends Saturday, April 5, 2014                                                                                                                                                         Christmas Party Saturday, December 6, 2014                                                                                                                                                                   Sickle Cell Sunday (Sunday)October 26, 2014- St. John Baptist Church, Alsen LA

Fundraisers                                                                                                                                                                                                                                            ] Sunday-Monday, May 18-19, 2014 Coach’s Party-Silent Auction Golf Tournament                                                                                 Thursday June 19, 2014 World SCD Luncheon (Walk Kick Off)                                                                                                                                  ] Saturday, June 28, 2014 Trail Ride                                                                                                                                                                                 Saturday, August 16, 2014 Sickle Cell Walk/Run                                                                                                                                                             August- December Sickle Cell Drives (Churches, Schools, Businesses…)

I would personally like to thank Ms. Lorri Burgess, COO/ Executive Director of the Baton Rouge 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!

Ms. Lorri Burgess Contact information:                                                                                                                                                                                     2301 North Boulevard, Baton Rouge, LA 70806                                                                                                                                                         225.346.8434 (office) 225.334.0628 (fax)                                                                                                                                                             lburgess@brscaf.org email

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About Author

James Griffin

James Griffin

James Griffin is thirty-two years old and lives with sickle cell anemia SS. He was first diagnosed with the hereditary blood disorder at the tender age of two. The only child of four to be born with sickle cell he faced many hardships and struggled with coping with his illness. For many years he kept his illness a secret. However feeling there was a need for more advocates and wanting to offer to others a support base he felt was lacking, he decided to open up and share his experiences in hope of having a positive impact on someone else’s life with sickle cell. Due to many hospital admissions and limited work opportunities James developed a strong passion for reading and writing. His personal mission in life is to continue inspiring others living with sickle cell to open up about their illness. James says “For me it is an honor and privilege to be contributing to the largest patient run community in Sickle Cell Warriors.”

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1 Comment

  1. Ellej
    Ellej January 27, 08:10

    Thank you for this writing this article. I contacted this organization bc the services they provide is not found here in Illinois and I would like to change that. The president answered the phone & encouraged me. She gave me tips and wisdom to start my non profit. I didn’t know these services existed. So glad for this article! Again thanks!

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