News

In the lead up to its observation of World Lupus Day, LFJ Lupus Warriors and Health Volunteers have been hitting the airwaves on a mission to Make Lupus Visible, raising awareness and drumming up support for the fight against Lupus.  This year spokespersons will be placing a spotlight on issues affecting access to care for Lupus and inviting participation by patients, practitioners and the public in a range of activities planned before and on the day.

The Foundation's media campaign kicked off with an interview with Lupus Warrior' School principal and author Dr Marsha Smalling, accompanied by Dr Desiree Tulloch-Reid, Consultant Rheumatologist and Immediate past president of the Foundation.

Dr Tulloch-Reid expressed appreciation for dedicated volunteers like Ms Sybil McLean, former Board member, who has been working behind the scenes during the Foundation's Public Awareness Campaigns to schedule interviews and coordinate the many patients and medical volunteers participating.  She also expressed thanks to the Broadcast Media community:

"The Foundation is always grateful to our generous media partners who have offered air time to help raise awareness, dispel stigma and increase support for persons living with this condition.  We know that knowledge about lupus saves lives and partnerships have had an important impact on many lives."

The public are invited to view or listen to the following interviews scheduled so far:

May 4, 7:45 a.m. TVJ Smile Jamaica, 7:45 a.m. with Dr. Desiree Tulloch-Reid, Consultant Rheumatologist and Dr. Marsha Smalling, Lupus Warrior

May 7, 1:15 p.m., RJR 94FM, "Palav" with Gerry McDanielInterviewees: Dr. Lori-Ann Fisher, Consultant Nephrologist and Dr. Marsha Smalling, Lupus Warrior

Monday, May 8, 2023 at 6:45 a.m.  CVM@Sunrise CVM TV.  Dr. Desiree Tulloch-Reid, Consultant Rheumatologist

Monday, May 8, 2023, 3:30 p.m  NCU FM "The Check Up"  with Mical Forsythe.  Dr. Stacy Davis, Consultant Rheumatologist.

May 9, 8:30 a.m.  Nationwide News Network, "A Healthier You"   Dr. Lori-Ann Fisher, Consultant Nephrologist

May 10, 8:15 p.m., Power 106FM, "Powering Your Health" with Dr. Jacqueline Campbell.  Interviewees: Dr. Stacy Davis, Consultant Rheumatologist, Lupus Warrior and Audrey Malcolm, Lupus Warrior

May 10, 2:30 p.m. RJR 94FM "Too Live Crew" with Julie-Ann Jemmott, Pharmacist and Lupus Warrior

For more information on Activities and Events for World Lupus Day visit www.lupusfoundationjamaica.org/events .

World Lupus Federation is inviting input from Jamaican Lupus Warriors and Caregivers, through participation in this year’s World Lupus Federation patient survey which is seeking to explore access to lupus care. The survey went live on May 15 and is due to close on April 3.

Lupus Foundation of Jamaica is a member of the World Lupus Federation, and international community of Lupus Advocacy groups that collaborate together for maximum impact in the interest of Lupus Warriors across the world, usually culminating with the joint observance of World Lupus Day on May 10 each year. 

Mike Donnelly, Vice President, Communications, Lupus Foundation of America, World Lupus Federation said the Federation is particularly interested in gaining participation from the Jamaican Lupus community through the Lupus Foundation of Jamaica, which is considered one of the most active of their groups.  "The information collected from the survey will help us learn more about the barriers to accessing lupus care and better advocate for and support patient needs."  

This 10-minute survey is an important way for the Federation to understand access to care among those with lupus and raise awareness worldwide. The term "access to care," refers to a person's ability to see a healthcare professional with knowledge of lupus treatment in a reasonable amount of time. 

This survey is intended for people diagnosed with lupus or those who are caregivers of those diagnosed with lupus. All responses to this survey are anonymous.

The survey opened on March 15 and will close on April 3, 2023.  Persons living with Lupus or their Caregivers may take the survey by  clicking the following link:

 - https://bit.ly/WLDsurvey23

After analysing the survey results the Federation will provide key messages and social media sharables that we can use in future communications including World Lupus Day to increase global awareness of lupus among the general public, policymakers and media.

The Annual General Meeting of the Lupus Foundation of Jamaica is to be held on Wednesday March 29, 2023 at 6 pm.  Nominations are invited for Board positions for the 2023/2024 administrative year.

• Eligibility for Nomination: Persons nominated will need to be active members the LFJ (up to AGM date) and receive two or more nominations from active members of the LFJ, to be considered.  In addition, nominees will be required to confirm that they accept nomination for the position, declare no conflicts of interest, and consent to other requirements for service, to be put forward as candidates. 
• Roles & Functions of Board Members: The Organisation Chart below illustrates the current Governance Structure including committees overseen by Directors.  A brief Description of Board positions is also provided to assist in appropriate selection of candidates.
• General Expectations: In general, Board Members should be prepared to commit 10 hours per month to their role, to attend monthly meetings and occasional Board retreats, provide reports as required, participate in strategic planning, participate in fundraising initiatives and serve on committees, in the interest of the LFJ.

• Submission of Nominations: The completed Nomination form may be submitted by mail, email, fax or hand-delivery and should be received by Wed March 22, 2023, 4 pm at 7 Barbados Avenue, Kingston 5, 8767548458, or info@lupusfoundationjamaica.org.  Members are encouraged to confirm that their submitted nomination forms have been received and logged.

• Unfilled positions: For any vacancies that remain after the AGM, the members of the elected board (2023/24), once formed, are authorized to recruit and co-opt suitable persons for Board service.  Persons not elected or not available to take on full Board service may be co-opted to serve on the Committees listed below or other special committees.

Organisation Chart

Description of Board Positions:

Development Director: LFJ Ambassador with planning and marketing skills and able work with potential donors, sponsors and supporters. Able to dedicate 10 hours per month on a regular basis.

Financial Director: Strategist who will work closely with the president by taking a proactive stance in managing the organizations finances. Requires a donation of 10 hours per month.

Services Director:  An Administrative and HR wizard who can think on his/her feet and follow through with deliverables. Able to delegate and get results.

Programmes Director: An analyst and wordsmith able to gather statistics regarding the effectiveness of our current programs as well as managing the review and updating the organizations documents.

Board Member at-large: These are very valuable board members who form sub-committees, provide advice and pitch-in wherever there is a requirement.

Youth Member: Lupus Patient or family member, age 18 – 30: Good communicator and connector who can serve on committees and contribute to Youth engagement including Education, Communication & Membership

Please click here to download Nomination Forms and detailed instructions;  NOMINATION INFORMATION AGM_2023.pdf

KIM Mair, chair of the Council of Voluntary Social Services (CVSS) — the coordinating body for non-governmental organisations (NGOs) serving in Jamaica — said that technology and data should be used to develop interventions to aid vulnerable groups, including those affected by lupus. Click the link below to read the article.

https://www.jamaicaobserver.com/news/cvss-advocates-for-proper-data-on-lupus

A call is being made for technology and data to be used to develop interventions to aid vulnerable groups across Jamaica, including those affected by lupus. 

Click the link below to read the article. 

https://our.today/cvss-urges-use-of-technology-data-in-developing-interventions-for-persons-with-lupus/

CVSS lobbies for use of data, and technology to develop lupus intervention. Click the link below to read the article. 

https://jamaica-gleaner.com/article/news/20221012/cvss-lobbies-use-data-technology-develop-lupus-intervention

Check out this article by the Jamaica Gleaner highlighting why you need to know more about Lupus.

https://jamaica-gleaner.com/article/health/20221012/heres-why-you-should-know-more-about-lupus

Help us "Fun"-Raise! Lupus Awareness Month continues with our annual family friendly fundraising lapathon LAPS FOR LUPUS AWARENESS next Sunday October 16, 2022, 5 - 8 pm at Emancipation Park. Let's show up in our numbers to to show our support and enjoy free workouts, music, health demonstrations, games, sponsored prizes and entertainment, all for a great cause.

Proceeds towards our warrior welfare fund. REGISTER OR DONATE online with this link: https://lupusfoundationofjamaica.wildapricot.org/event-4979206

Then SHARE THIS LINK or Pick up your own LAPATHON SHEET to sign up family, friends and co-workers. Let's support our warriors!

Click here to register for the event

Hi, I am Dr Susan Manzi, I am a Lupus doctor and Medical Director of Lupus Foundation of America.

Do you have questions about lupus?

I will be joining Lupus Foundation of Jamaica for a special edition of Ask the Expert Live. No question is off limits.

Send us all your questions and join me live on Wednesday October 5 at 6 pm Jamaica time to hear your questions answered.

Send your questions:

• Whatsapp - 8767783892 
• Email Us - Info@lupusfoundationjamaica.org