Black Health Matters and Communities of Harlem Health Revival have formed an important alliance to discuss the option of research studies for people diagnosed with lupus SLE (systemicLupuserythematosus). Lupus SLE discriminates against African American women affecting 1 in every 537. This disease puts them at risk for life threatening complications such as neurologic or kidney disease and end-stage renal disease. Sadly, many of these women are less likely to have the support needed to battle this autoimmune disease either physically oremotionally.
The Communities of Harlem Health Revival (CHHR) and Black Health Matters’ (BHM) Lupus and Research Study Awareness Dinner Program was convened on August 23rd from 6:00 -9:00 pm at Londel’s restaurant in Harlem, NY. Black Health Matters received the support of leading churches under the CHHR umbrella for this initiative. Communities of Harlem Health Revival was founded in 2006 to motivate Harlem residents to adopt a healthy lifestyle by providing tools and information that empower community residents to advocate for themselves and learn more ways to take better care of their health. The goal is to bring the holistic message of body, mind, and spirit intopractice.
Led entirely by volunteers, the health ministries of many prominent churches in Harlem were open to learning about lupus and the options that participation in a research study offers. Together with CHHR, Black Health Matters was able to gain traction about its mission of empowering women with lupus.
The response to the call-to-action was overwhelming! The Lupus and Research Dinner Awareness Program was originally planned for 30 attendees. The final attendance was closer to 60 – 98% of whom were female!
A Full House
Attendees hailed from churches across Harlem. This included the executive Health Ministry leadership from Riverside Church, Ephesus Seventh Day Adventist Church, Canaan Baptist Church, Convent Baptist Church, Abyssinian Church, and St. Charles Church to name a few. Additionally, nurses from the New YorkBlack Nurses Association participated as well as Dr. Shelton Fields, the President of the New York Chapter of the National Black Nurses Association. Other highlighted attendees included: the Rev. Debra Northern, Parish Minister Riverside Church and the Rev. Dr. Lisa D. Rhodes, Union Theological Seminary. Dr. Rhodes is the Executive Director of the RISE Together Mentorship Network, a soon-to-be-launched national mentorship initiative for women of color in ministry. Lastly, there were three board members/founders of CHHR in attendance which included Joanne Thigpen of Abyssinian Baptist Church.
Roslyn Daniels, president and founder of Black Health Matters opened the program by recognizing the health ministries in attendance and outlining the purpose of this dinner program. Following her was a member of CHHR and community advocate, Doris Rhem, who shared her passion for community service. She gave a strong presentation with a plea that more African Americans consider research study participation. Roslyn Daniels followed up with an overview of the different phases of a research studies and how physicians have a responsibility to make recommendations for patient participation. She stressed that the dinner could be a national model for advocacy for African American communities.
Adrienne Nicole, a lupus patient and advocate followed her with her own personal testimony on living with lupus. She shared her personal journey of diagnosis and why research study participation is imperative. Adrienne works with the Lupus Research Alliance in various capacities. Angela Rochelle, of Continuum Clinical spoke about the importance of research studies and thanked her client Bristol-Myers Squibb for embracing diversity in supporting programslikethis. She also shared that clinical research could lead to more options for those that bear the burden of living with lupus.
The dinner program closed by highlighting a Lunch & Learn series of smaller discussion groups that will be held at 4 prominent churches in Harlem in October and November.These Lunch & Learn sessions will provide an environment where specific medical questions about research studies could be addressed. The free informational Lunch & Learn sessions will be held at: Canaan Baptist Church, October 28th, 2018; Ephesus Seventh-day Adventist Church, November 3rd, 2018; Abyssinian BaptistChurch
on Sunday, November 4th; and at Convent Avenue Baptist Church, on Saturday, November 10th, 2018. The Lunch & Learns will feature lupus advocate and patient, Adrienne Nicole, an Emmy-nominated producer, writer, and director who has worked for media organizations such as BET, TVOne, and Essence. These sessions are expressly for people living with lupus and their loved ones who want to explore options relating to researchstudies.
For additional information on lupus see: www.blackhealthmatters.com/lupus