On this special occasion of International Women's Day, as we celebrate the incredible achievements and enduring resilience of women around the world, we take this moment to thank and honor all our treasured women, including our Lupus Warriors, those who support them and the incredible persons who are part of our network of advocacy and support.
We who serve continue to be moved by the strength and courage displayed by our Lupus Warriors: Your journey with lupus is marked by countless challenges, yet you face them with unwavering grace and determination, inspiring us all with your resilience and your ability to navigate life's hurdles with courage and hope. We are deeply honored to stand alongside you in your unwavering commitment to advocating for yourselves and others living with lupus.
We also honor and recognize all our volunteers, donors and supporters that give of themselves and resources to support, encourage and advocate. Together, we form a community bound by compassion, support, understanding, solidarity and strength.
On this special day, may you be surrounded by love, peace, and the healing presence of God as you continue your journey with grace and resilience. May you find comfort in knowing that you are never alone, and may you always remember the profound impact of your presence in this world.
As we reflect on the significance of International Women's Day, let us reaffirm our commitment to serving and supporting one another, advocating tirelessly for greater awareness, understanding, and access to care. Together, we will continue to stand as a united force, driving positive change and paving the way for a brighter, more inclusive future for all.
With deepest gratitude and admiration,
Lupus Foundation of Jamaica
7 Barbados Avenue, Kingston 5
Phone:876-754-8458, Helpline: 876-778-3892
email: info@lupusfoundationjamaica.org || website: www.lupusfoundationofjamaica.org
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Today is Giving Tuesday!
Lupus Foundation of Jamaica is participating in Giving Tuesday today, the global day of unity and giving.
As you know, since 1984 Lupus Foundation of Jamaica has been working to improve the lives and outcomes of an estimated 6000 Jamaicans affected by Lupus through information, support, advocacy and promoting patient-centred research and interventions.
In observance of Giving Tuesday we will be distributing food items donated by our partners Rapid Relief Team, Grace Foods and Wisynco to assist our Lupus Warriors.
Many are experiencing cash flow challenges affecting food availability for themselves or their families, or just not feeling well enough to source and prepare food and would greatly appreciate some handy food items or just a kind gesture that tells them they are not alone. Throughout the week and month we will be distributing Five Hundred items including canned fish and vegetables, powdered soy and food drinks, porridge and soup mixes, pasta, noodles, liquid juices, beverages or water.
Join in with us! Get in touch with us at 8767783892 or info@lupusfoundationjamaica.org or drop in to our Help Centre if you could use some food items yourself, know of a Lupus warrior with a need or are available to volunteer for distribution or delivery.
We are also inviting you to support our year-end fundraising efforts to continue our help to Lupus Warriors throughout the year.
Our goal for this Giving Season is to raise $1,500,000 JMD or $10,000 USD towards the continuation of critical programmes including:
And help us get ready for new programmes like our Peer Support Volunteer training programme and Immune Diagnostics programme to identify, reach and support the most vulnerable and at risk for complications of lupus.
As a volunteer-run, member-based, free-standing organization funded entirely by fundraising activities and donations , we count on our community of support to sustain the work. https://lupusfoundationofjamaica.wildapricot.org/Donations
Help us kick off to a strong start this Giving Tuesday - plan to give, fundraise, volunteer. Join the Fight today!
BECOME A MEMBER
On October 15, 2023, Lupus patients, family members and other supporters will be gathering at Emancipation Park with Lupus Foundation of Jamaica for their annual Laps for Lupus Awareness lapathon event, as they seek to raise funds to support those affected by lupus.
Lupus Foundation of Jamaica (LFJ) is a 38 year old charity consisting of patients, health care workers and others seeking to improve the outcomes of an estimated 6000 Jamaicans affected by the chronic or lifelong autoimmune disorder.
Now at its Sixth staging, Laps for Lupus Awareness has become a much-anticipated family-friendly event supported by lupus warriors, their families, friends and the wider community. Hosted by MC Atkinson, with support from Fitness Guru Kurt Dunn and Gamesmaster Dalton “Potcova” Spence, the event will feature free workout, games and live entertainment, as well as prizes, health demonstrations, and refeshments by sponsors.
A special treat is also in store for supporters who will enjoy live music courtesy of talented supporters in the Medical Community. Dr Mike mills, Gastroenterologist who plays the bass guitar, has been a veteran supporter of the Event. This year he is joined by colleague Dr Gayan Smith, known in musical circles as Auriya, performing her hit single Pendulum and other songs. “It is a great pleasure and an honour to have been included in this year's staging of the Laps for Lupus Fund raiser. I have the privilege of helping my Lupus patients with traditional medicine and now the added pleasure as a recording artist to offer them more therapy with my music.” The two will be supported by Hi Point Band and Bongo Herman also in support of the cause.
The event is one of a series of activities being staged by the organisation in observation of Lupus Awareness Month under the theme Lup-US: You, Me, US - Stronger Together. Corporate entities and the public are invited to support the effort by donating online or through a member or supporter and to also attend the event in a show of solidarity with the “Lupus Warriors”.
The campaign has also been enjoying the support of Miss Jamaica Universe Dr Jordan Levy, also a medical doctor, who was present at the Launch of the Campaign in Oct October 4 at the Foundation’s Learning & Health Centre at 7 Barbados Avenue and shared about her involvement in the Campaign. “As a black Jamaican woman in the medical field, this is important to raise awareness, to bring support for people who have debilitating issues - Lupus being one of them. I had a Kindergarten teacher, she passed away from lupus and that was my first welcome into the disease. So it's very tough, the situations that we're put in when we are faced with a health issue that can cause us to lose our lives. So I want everybody to know that support is the number one thing we need to push for. Having a community where we all feel safe or we all feel heard, that's very important. So I am very appreciative, because there is a community, there is a way for people to feel seen and feel heard and that's the only way we can move forward: any type of community when we listen to one another and provide support for one another, So that's very important to me”
She encouraged the members of the public to also get in involved with the Laps event other Lupus Awareness Month activities such Purple Fridays (wear a something purple on each Friday in October), to set up a poster display at their workplace or school and support the Foundation’s Social Media campaign. The final key event will their Annual Lupus Symposium on Oct 22 which is free to the public and will be held both virtually and in person at UWI regional Headquarters.
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Lupus Foundation of Jamaica is a member-based, volunteer-run charity in operation since 1984 dedicated to improving the lives and outcomes of persons with lupus through information, support, advocacy and research. To Learn more about the work the LFJ is doing, visit website and social media pages:
website: www.lupusfoundationofjamaica.org Facebook | YouTube | Instagram | LinkedIn
Lupus Awareness Month, October 2023: Lup-US – You, Me, Us: Stronger Together
Kingston, Jamaica, October 5, 2022:
Lupus Foundation of Jamaica (LFJ) kicked off its observation of Lupus Awareness Month, October 2023, under the theme Lup-US – You, Me, Us: Stronger Together, with a launch event on Wednesday, October 4 at the Foundation’s Learning & Help Centre at 7 Barbados Avenue, Kingston.
Mr. Everton Anderson, Chief Executive Officer, National Health Fund, was the keynote speaker at this year’s launch. “Lupus is known as the silent illness, but it cannot be denied that it is a very serious one,” Anderson said. “I am proud that as a country we are amplyfing the condition, and the need surrounding it, since Jamaica has one of the highest rate of diagnosis worldwide.”
Miss Jamaica Universe 2023, Dr. Jordanne Levy, General Practioner, made a special appearance. Dr. Levy believes, that support is the number one thing we need to push for. She noted that, “having a community where we all feel safe, where we all feel heard is very important, so what the Lupus Foundation is doing is very commendable in providing that community for people to feel seen and feel heard.”
Lupus is a serious autoimmune disease affecting an estimated 6000 Jamaicans, often with life-threatening complications. Dr Desiree Tulloch-Reid, Consultant Rheumatologist and President of the Foundation, explained that, unlike most other chronic noncommunicable diseases, lupus is considered a disease of the young, with most persons, predominantly females, being diagnosed between ages 15 – 44 years - at the peak of their productive lives – with wide implications for individuals, families, and communities. In addition to often debilitating symptoms of the disorder, persons with lupus often face delayed diagnosis, difficulty with accessing care, high costs of treatment, as well as the difficulty of living with a condition that may be poorly understood by the persons around them – challenges which can also contribute to risk of poor outcomes.
The theme for Lupus Awareness Month, October 2023, Lup-US – You, Me, Us: Stronger Together, is a nod to the cohesive, often sacrificial, efforts of a diverse community, including patients, termed “lupus warriors”, their families, health professionals, volunteers, donors and other supporters that have worked together through the Foundation to make strides in the fight against Lupus. It is also a call to action for all Jamaicans to raise their awareness of the illness and show support for the persons affected. “Knowledge about lupus saves lives – it dispels stigma, and promotes earlier diagnosis and access to critical treatment and support. The message is louder and goes further when we all speak out together and show our support in tangible ways.”
This year’s Lupus Awareness Month Campaign, a month-long outreach programme targeting 1.2 million persons, will include events, community engagement, media interviews, a comprehensive social media campaign and medical professional and patient education.
Activities planned for LAM 2022 include
Key events include
A series of Print and video features themed "This is Lupus" will also highlight inspiring Lupus warriors who are “surviving and thriving” in spite of lupus.
The Foundation acknowledged the leadership of the National Health Fund (NHF) for significant support to the Lupus community through the inclusion of lupus since 2019 in the Individual Benefits Programme, which provides drug subsidies to persons using private sector pharmacies for critical medications used to treat the illness. The NHF also operates pharmacies in the Public Sector, where medications are accessed free of charge, and administers the Ministry of Health & Wellness Compassionate Fund, which assists with various healthcare costs on a case-by-case basis.
The participation and endorsement of Miss Jamaica Universe 2023 Dr Jordanne Levy, also a medical doctor, is also expected to provide an added thrust to the campaign.
Major sponsors of the campaign include Partners Interventions Centre of Jamaica, National Health Fund, Medical Products Limited, and Ipca Laboratories.
The Foundation is inviting Corporate Jamaica as well as the wider public to support the effort by donating, volunteering, and participating in all events and to learn more by visiting the Foundation's website and social media platforms.
Lupus Foundation of Jamaica is a volunteer-run, member-based, charitable organization in operation since 1984 and has been at the forefront of efforts to improve the survival, outcomes and quality of life of Jamaicans affected by lupus through information, support, and advocacy. This is done through a range of programmes and activities in support of Lupus warriors including medical professional education, public education campaigns, Help Centre, online digital library, coaching, counselling, support groups, newsletter, medical expense assistance, access to health professionals, advocating for access to care and medications, and promotion of patient-centred research.
LUPUS FOUNDATION OF JAMAICA
7 Barbados Avenue, Kingston 5, Jamaica, W.I. | (876) 754-8458
info@lupusfoundationjamaica.org | www.lupusfoundationjamaica.org
Kingston, Jamaica, May 13, 2023: Lupus Warriors and Friends Make Lupus Visible
Lupus Warriors and Supporters were out in full force on Wednesday May 10, 2023, as Lupus Foundation of
Jamaica joined in with Lupus advocacy groups around the world for the twentieth annual observance of
World Lupus Day. The observance is designed to call attention to and increase support for persons with Lupus
in Jamaica and throughout the world.
Jamaica is said to have one of the highest rates worldwide of Lupus, a serious autoimmune disorder in which
the body’s immune system becomes dysfunctional, attacking healthy tissues and causing damage to various
organs of the body. The lifelong disorder affects women predominantly and is most commonly diagnosed
between ages 15 and 44 years.
The theme for this year's observance was Make Lupus Visible. The campaign leading up to the day included
television and radio interviews featuring medical experts and Lupus survivors (termed “Lupus Warriors”),
displays at clinics, schools and business places, as well as distribution of purple ribbons and merchandise,
with the public being encouraged to wear purple on May 10 in solidarity with persons living with Lupus. In
addition, members of the Foundation organised walks (dubbed Strides for Lupus) and other activities in
various locations across the island with images and recordings uploaded to Social Media pages. World Lupus
Day activities in Jamaica received endorsement by prominent figures including reigning Miss Jamaica World
Shanique Singh. Media personalities in the print and electronic media also gave their support to the
observance of the day.
The key event was a free Health Fair held at Emancipation Park on May 10, where attendees were treated to
lupus warriors showcasing their talent in poetry, craft as well as performance. Performers included Emily
Ruth who presented a vocal and Cello piece “The Prayer” and Kiana Jackson, presenting her dub poem “Lupus
Warrior”. Ms Jackson, a third-year student at Edna Manley College of the Visual Arts, diagnosed with lupus
at age seventeen, commented on the significance of the day for her. “Being able to attend an event, for
lupus, put on by lupus warriors and supporters makes me feel proud. Proud of the strides our community has
been able to make regardless of our circumstances. The space also feels like home, and so there is a sense of
belonging. It is a space where we are empowered and also united for the cause of spreading awareness. In
making Lupus Visible as the theme suggests, we make our voices heard and we tell our stories to teach the
world about Lupus - and through this we are seen, recognized and saluted for our strides as warriors.”
A Live Broadcast by Riddim FM, hosted by Vernon Derby on his new show Spot On, kept listeners fully
involved with interviews and conversations with health professionals, Lupus Warriors and volunteers.
Patrons also enjoyed free health checks including blood pressure, cholesterol, blood sugar measurements,
courtesy of National Health Fund, and delivered by staff from Heart Foundation of Jamaica. Jamaica
Association of Professionals in Nutrition and Dietetics, lead by president Dr Vanessa White-Barrow, provided
free personalised consultations and nutritional counselling. Other Professional Associations participating
included Jamaica Psychiatric Association with Dr Kraig Radlein and staff from Community Mental Health who
interacted with patrons and gave health talks. Past Presidents of the Foundation, Dr Karel De Ceulaer, Dr
Stacy Davis and Dr Desiree Tulloch-Reid and other board members and volunteers also interacted with
attendees, many of whom signed up as members and volunteers. Dr Tulloch-Reid expressed gratitude to
“sponsors such as Fosrich Group, National Health Fund, Grace Foods and Cesco Ltd and to all those who took
time or donated to support the event and other activities.”
With a access to care for Lupus being the special focus of this year’s campaign, the Medical/Health Care.
Community also turned out in strong support of the occasion and the efforts of the Foundation. In addressing
the gathering Dr Brian James, President of Medical Association of Jamaica, highlighted the importance of
education, early detection, appropriate management, and follow-up to prevent or minimize complications
and secure good outcomes. “Greater knowledge of lupus can help save lives by promoting earlier diagnosis
and treatment, reducing stigma, and increasing support for those affected.”
Dr Karen Phillips, President of Association of Consultant Physicians of Jamaica and Mr Orville Johnson,
Chairman of Jamaica Medical Foundation each presented donations towards the Foundation’s work.
A symbolic Balloon release by lupus warriors, health professionals and other supporters was a symbolic
moment in a special Opening ceremony that marked the progress as well as aspirations for a brighter future
for Lupus warriors.
END
Lupus Warriors Talent on Parade!
Show us what you got this World Lupus Day for a chance to perform at the Health Fair May 10 and win prizes.
How to enter: Send a video of your talent to SpotOnWithVernon@hotmail.com or tag us on social media
Deadline: May 7, 2023
LUPUS WARRIOR TALENT ON PARADE!
How to enter
Make a video recording of yourself performing a talent piece - a musical item, poem, skit, joke etc
Email the video to SpotOnWithVernon@hotmail.com by Sat May 6
Entries will be posted on LFJ and Riddim FM Social Media pages
Be prepared to showcase your item at the World Lupus Day Health Event on Wed May 10 at Emancipation Park if selected in the Top 5
TIPS
Use landscape mode when recording your video
Try wetransfer.com or Dropbox to share your video.
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.
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
Unit 29, Winchester Business Center Kingston 10, Jamaica, W.I.
info@lupusfoundationjamaica.org, (876)-778-3892
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