News

  • 1 Jan 2021 10:52 AM | Anonymous

    JANUARY 2021 NEWSLETTER

    Thank You For Your Support During 2020

    This is just a note to say thank you for the support you have given to the Lupus Foundation of Jamaica during 2020. We truly appreciate your commitment, through your time and means, to improving the lives and outcomes of persons challenged by lupus in Jamaica.

    During 2020, with your help, and in spite of the challenges of Covid-19, we have be able to continue the work, including:

    • Supporting our warriors: We were able to stay accessible to our lupus warriors throughout the pandemic, with over 300 direct support contacts with persons across the island providing information about lupus, help finding a treatment centre, accessing member benefits such as pharmacy discounts, counselling and connection with a support network, monthly support group meetings, and distributing care packages to our lupus warriors during the holidays.

    • Record impact in Lupus Awareness through public education campaigns, including a record-breaking social media campaign with reach of over 25,000 through engaging messages and new programming, as well as hundreds of thousands of potential listeners/viewers through live media during our celebrity-endorsed Lupus Awareness Campaign "Knowledge About Lupus Saves Lives"

    • Providing a range of educational programmes for our health professionals, lupus patients and the public - including World Lupus Day Virtual Open House and virtual Lupus Symposium, a new monthly programme Ask the Expert Live on Facebook and You Tube, expanded educational content on our website and You tube pages

    • During 2020 we logged over 2000 volunteer hours through over 40 active volunteers, and were inspired by creativity, innovation, resilience and kindness among volunteers and members.

    In the coming year, we would like to extend our reach to increase membership across the island, establish support groups in 3 more parishes, facilitate access to special testing for lupus patients that will help save lives and address the special needs of children with lupus.

    We want to thank you again for all you have done to support the cause, as we look forward to your continued support in the Fight Against Lupus!

    You will receive a separate email soon with a summary of your donations during 2020. We invite you to visit our website or Learning Centre or contact us to become a member, donate or volunteer, update your information, or stay abreast of our News and Upcoming Events.

     

    UPCOMING EVENTS:

    Jan 27 (Wed)
    Support Group Meeting Lupus Support Group Western Ja

    February 3 (Wed) 
    New Season Launch Ask the Expert Live - Lupus and the Kidney with Dr Raquel Lowe-Jones

    February 8 - 12
    Pre-Valentine's Day Merchandise Sale!

    February 14 (Sun) 
    Valentine's Day
    - post a Purple Love Note to a Lupus Warrior

    February 18 (Thu) Support Group Meeting (Kingston) - Zoom


     

    Merchandise is still Available for purchase

    Show your lupus colours and support when you wear one of our LUPUS Warrior T-Shirts.  Available with 3 sayings, visit our website to get yours, or follow the link below.

    ORDER NOW

    SUPPORT THE LUPUS FOUNDATION OF JAMAICA - many options available online follow link below.

     

    DONATE

     

    NEWS

    Ask The Expert Live is Back!

    We are preparing for a New Season of Ask The Expert Live starting February 2021! What topics you would like to have covered?

    Just text back to this number or send us an email at: info@lupusfoundationjamaica.org
    Looking forward to your feedback!

     

    Tell Us Your Story!

    We are collecting stories! LFJ is built on our members and we want to hear from you! We also want to share your stories - of challenges, resilience, overcoming, or just keeping on, as we seek to inspire and encourage other lupus warriors and supporters. What keeps you going? What part has the LFJ played in your journey and what does our LFJ community meant to you? What is your vision for the LFJ for the future?

    Share what is on your mind/heart: send us an email at info@lupusfoundationjamaica.org under the subject "My LFJ STORY" - You can also send us a text on our helpline 876-778-3892 starting with the words: MY LFJ STORY. Bear in mind your comments may be used in upcoming articles/publications. Click here for more details and tips to get started!

    7 Barbados Avenue
    Kingston 5, Jamaica, W.I.
    876-754-8458

    Helpline
    876-778-3892 (Voice/Text/Whatsapp)

    Email: info@lupusfoundationjamaica.org



     

    Learning Centre Hours
    Monday - Friday
    10am-12pm & 1pm-4pm



    FOLLOW US:

     
     


  • 9 Dec 2020 10:27 AM | Anonymous

    As the year winds down and the holiday season approaches, we want to take this opportunity to say Thank You for your support during this past year. 
    We also want to share some news and upcoming activities we think will interest you! 

    Thanks for making LUPUS AWARENESS MONTH OCTOBER 2020 a big success!

    We would like to say a big "Thank You" to our hard-working volunteers and supporters who helped make our 2020 Lupus Awareness Month public awareness campaign in October a big success!

    Under the theme "Knowledge About Lupus Saves Lives" we had many highlights:

    • Endorsement of our Lupus Awareness campaign by Miss Jamaica Universe Iana Tickle-Garcia and the National Health Fund - increasing our impact and reach of our mesage
    • Unprecedented Social Media Campaign with over 20,000 persons reached and 1000% increase in followers on Facebook, Instagram and Youtube
    • Launch of new social media programming including Your Story Fridays and Ask The Expert Live
    • Nine Live Media Appearances by our volunteer health professionals including television features on popular programmes TVJ Smile Jamaica and CVM Inspire Jamaica and several radio features promoting lupus awareness
    • Launch of our new line of designer Branded Merchandise with celebrity endorsement and online purchase options
    • Successful first virtual staging of Laps for Lupus Awareness with over 200 attendees
    • Successful first virtual Staging of Annual Lupus Symposium with record participation - 600 registered participants including health professionals and patients and hundreds more on livestream internationally and 100% positive reviews!

    The impact of this effort on awareness and knowledge of lupus will indeed save lives!  

    With your support we can continue this work and do even more in the Fight Against Lupus!

     

     

     

     

    If you didn't get a chance to send us your pledge payment for Laps For Lupus Awareness you can do that right now!

    Donate

     

    Support our 555 HOLIDAY GIVING CAMPAIGN!

    Donate

    We are on a drive to raise $500,000 JMD ($5,000 USD) to continue our Support Programmes and to distribute holiday gift/care packages to 200 lupus warriors during the holidays!  

    Its Easy! Here's how you can help:

    • DONATE $555JMD/$5 USD(or higher) conveniently on our secure donation page, electronic transfer or in person (its tax deductible)
    • INVITE YOUR FAMILY & FRIENDS to donate sharing our Social Media invitations and messages (555 persons giving $555 will take us half way there!) 
    • SPONSOR A GIFT for a Lupus Warrior (special pricing available for members - be a Secret Friend)

    Here are some OTHER GREAT IDEAS for supporting LFJ this year!

    • Support LFJ in your holiday giving!  Instead of giving a present to your family member or friend, give a donation to the LFJ on their behalf!  Let them know your "gift" with our branded Holiday cards and stickers.  After all, now more than ever, it's far "more blessed to give than to receive"! 
    • Purchase 2021 Calendars or other branded merchandise (see our selection of T-shirts, masks, mugs here)
    • Support our Can Drive: take an LFJ collection can (or two or three) to your workplace, school or family and support our holiday Can drive, with stickers for donors giving $500 or more
    • Connect Us with a Caring Corporation: Suggest your Employer or other Company you are connected with to join our LFJ Caring Corporations family by giving a Tax Deductible Donation to the LFJ 

    VOLUNTEERS ARE NEEDED to design, prepare and distribute stickers, cards and gift packages.   Get in touch with us today!

    Don't miss these UPCOMING EVENTS!

    Don't miss these fast upcoming Events:

    • GIVING TUESDAY December 1, 2020 10:00 am: December 1 is International Day of Giving 2020 and LIVE LAUNCH of our 555 HOLIDAY GIVING CAMPAIGN 
    • ASK THE EXPERT Live Wednesday December 2, 2020 6 pm:  Our guest expert Consultant Dermatologist/Dermatopathologist Dr Jonathan  Your Skin and Lupus: Your Questions Answered live on Facebook and Youtube- start sending your questions! (email info@lupusfoundationjamaica.org, text 8767783892 on on live chat)
    • ANNUAL HOLIDAY SOCIAL Virtual Edition Thursday December 10, 2020 6 pm  - Join fellow members, volunteers, donors and special guests as we give thanks and enjoy fellowship, special features and givaways during this special Zoom event.  Not Yet a Member? Join up right now!

    May you stay safe, healthy and blessed!

    Désirée Tulloch-Reid

    President

    LUPUS FOUNDATION OF JAMAICA

    You Are Not Alone


  • 3 Dec 2020 11:29 AM | Anonymous

    On December 1, 2020 we launched our 555 Holiday Giving campaign to help raise funds to provide care packages for lupus patients during the holidays and continue our support programs  in the coming year.  We are aiming to start distributing packages on December 10, 2020.

    If 555 persons give $555 JMD (or $5 USD) we'll be halfway to our goal!

    Jamaica has one of the highest rates of #lupus worldwide. The #covi̇d19  pandemic has significantly impacted our patients with many experiencing financial difficulties, health issues, depressive symptoms and social isolation. 

    Your donation today will ensure the continuation of support programs, and advocacy provided by the Lupus Foundation of Jamaica to help our #lupuswarriors survive and thrive in these unusual times.

    Donate today to the Lupus Foundation of Jamaica.  

    Visit our website >> www.lupusfoundationjamaica.org/donations

    Or 876-754-8458, or 

    info@lupusfoundation.org


  • 25 Oct 2020 1:47 PM | Anonymous

    Kingston, Jamaica October 25, 2020. Since the Covid-19 pandemic several issues relating to lupus have been of urgent concern to patients and medical personnel with implications for the society at large. Jamaica has one of the highest rates worldwide of this potentially life-threatening autoimmune disease. Lupus Foundation of Jamaica, a local member-based group, have brought together local and international experts to ensure that these issues stay on the radar and are fully addressed at a free virtual Lupus Symposium to be held on Sunday Nov 1, 2020 from 10 am to 2:30 pm.

    Among these issues has been widespread concern that the disease itself, or even its treatments which suppress immune function, may place lupus patients in a vulnerable group for the potentially deadly coronavirus. In contrast, drugs used in treating lupus, such as steroids and hydroxychloroquine have been utilised widely in treatment of Covid-19, triggering shortages of the drugs in recent months for many patients. Safety issues surrounding use of these drugs have also been circulating in the news media.

    Perhaps predictably, the daily challenges faced by patients in coping with this chronic condition, also seem to be compounded during the Covid-19 Pandemic. The Foundation recently surveyed its members to better understand its impact on various areas from work or school disruption, financial issues, mental health and relationships to health care access and will also be having these addressed during the Symposium.

    Dr Desiree Tulloch-Reid, Consultant Rheumatologist specialising in Lupus and President of the Foundation spoke about the objectives: “We felt it was important that we address these complex issues surrounding lupus in the context of the Covid-19 pandemic as comprehensively as possible, both at the scientific and medical level as well as the more practical areas, always with the patient at the centre. We hope the information gained here will help us all look toward a positive future for lupus patients in Jamaica and worldwide.”

    This year’s Lupus Symposium, is to be streamed live on two social media platforms, and will be accessible to the public free of cost, thanks to sponsorship by the National Health Fund and other private entities. Under the theme Back to the Future: Embracing New Normals in Lupus Management, Research and Life,the event will feature local and international speakers covering topics such as Lupus and Covid-19 Pandemicas well as latest developments in Precision Medicineand Patient-Centred Research. A diverse panel of experts will also share on The Way Forward: Life with Lupus During and After Covid19and will address topical matters of health care access, work safety and opportunities and mental and social health for persons with lupus. A variety of special features such as short films, interactive question and answer and even music will further contribute to maximal participant engagement.

    Dr Roberto Caricchio, chief of Rheumatology at Temple University and Head of the Temple Lupus Programme, has been at the forefront of the international effort to understand the complexities of the immune system’s behavior in lupus as well as in Covid-19 infection. He was pleased to support the Symposium, in which his former mentee Jamaican Rheumatologist Dr Asana Anderson is also participating. Of his involvement in the effort he said “I feel empowered and humbled at the same time; empowered by the unprecedented world collective effort of physicians and scientists to end the COVID-19 pandemic, and humbled by the privilege I have to be part of it.”

    Prof David Isenberg, of University College London, who will be speaking on Precision Medicine in Lupus, is considered one of the doyens of lupus treatment and research internationally and author of a publication on the same topic this year in the highly-acclaimed medical journal the Lancet. He is also no stranger to Jamaica and the work being done here by local specialists. "I'm truly sad not being able travel, from a rather locked down UK to Jamaica, but delighted to be taking part in this exciting program. I'm keen to share with you some of the intruiging  developments in the treatment of SLE as we  move from an era of therapeutic 'serendipity to (immunologic) sense".

    Jamaican specialists Dr Taneisha McGhie and Dr Raquel Lowe-Jones, will also be in the line-up, presenting their international work in the field, supported by two former LFJ presidents, Rheumatologists Dr Karel De Ceulaer and Dr Stacy Davis.

    About LFJ:

    Lupus Foundation of Jamaica, established in 1984, is a member-based, volunteer-run, charitable organisation dedicated to improving the lives and outcomes of Jamaicans affected by lupus through information, support, advocacy and research. The Foundation has approximately 169 active members, who were recently surveyed in an effort to better understand their needs during the Pandemic and how to address them.

    The annual Lupus Symposium has been a flagship event for the LFJ for over 20 years, and follows a month-long public awareness campaign in October, Lupus Awareness Month. The event brings together experts in the field to present the cutting edge in Lupus treatment and research as well as address practical issues affecting those living with lupus. This event provides both Continuing Medical Education for a range of health professionals as well as information for patients and the public in a shared learning environment. Although necessitated by the circumstances of the Covid-19 pandemic, the switch to a virtual format has attracted record attendance across Jamaica, as well as regionally and internationally through live streaming on multiple platforms and convenient online registration.

    The public is invited to visit the Foundation’s website, lupusFoundationJamaica.org or social media pages to register for the event, or for more information, to join, volunteer or donate.

    ####

    For more information on this topic, you may contact Desiree Tulloch-Reid, 8765744954 or email rheumjamaica@ymail.comor info@lupusfoundationjamaica.org.


    https://www.news-medical.net/news/20201019/Temple-researchers-identify-criteria-to-predict-cytokine-storm-in-COVID-19-patients.aspx

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7007776/

    https://pubmed.ncbi.nlm.nih.gov/29652656/

    International perspectives on Patient Involvement in Clinical Trials in Nephrology | Request PDF


  • 12 Oct 2020 6:23 PM | Anonymous

    Kingston, Jamaica- October 9, 2020- Iana Tickle Garcia, the reigning Miss Jamaica Universe, is on a drive to promote lupus awareness in Jamaica.  Iana along with friends Umeko Chin and Terina Dryden, fellow contestants from the 2019 Miss Jamaica Universe competition, have re-united around a common cause – Lupus Awareness.


    On Thursday, October 8, the three friends paid an early morning visit to Lupus Foundation of Jamaica (LFJ) Learning Centre where they donned branded T-shirts with awareness and inspirational messages and posed for pictures to promote sales of items in support of the Foundation's Fundraising efforts.  


    Iana became involved with the Lupus Awareness cause through her friendship with Umeko Chin, a Lupus advocate and survivor who advanced to the finals of the 2019 Miss Jamaica Universe Pageant.

    Over the course of the Pageant, she educated all of us about her disease, what she goes through, and slowly but surely she introduced all of us to the Lupus Foundation.” Tickle Garcia said.  
    Jamaica is believed to have one of the highest rates of Lupus worldwide with an estimated 6000 Jamaicans affected.
    Members of the public are also being encouraged to Put On Purple on Fridaysfor the month of October and collect posters and informational material for local displays. Visit the LFJ websiteor contact their office at 876-754-8458, for further information, to purchase merchandise, register for an event, join, donate or volunteer.  

    “…after the pageant, I decided that I want to become more involved to help her and her efforts… because I believe in what they (LPJ) are doing. I realise that it is not something that many are aware of, especially how it affects us… and I always wanted to be a part of that, and help my friend.”

    Umeko, a 23 year old Tourism major, who now sits on the Board of the Lupus Foundation of Jamaica and has helped with planning of the Lupus Awareness Campaign, called on her friends to help model branded LPJ merchandise commissioned by the Foundation to raise awareness and raise funds for the cause.

    The shirts, sporting captions such as "Born To Be Awesome", "I Can I will" and "I Am Stronger Than I Feel" were designed by Lot60 Apparel's Randy Fagan. Branded facemasks and wrist bands were also designed for the effort. Lot60 designs were sponsors of Umeko during her participation as a finalist in the 2019 Miss Jamaica Universe.

    Lupus is an autoimmune condition, which means it is caused by a dysfunctional immune system that attacks healthy organs and tissues causing damage. The disease typically starts young, with an average age of onset of 22, and is lifelong, with women affected 9 times more than men. Symptoms can include fatigue or weakness, joint pains, severe skin rashes, hair loss and even organ disease particularly the kidneys, as well as heart, lung, brain or nervous system.

    Activities being promoted during the 2020 campaign include sale of branded merchandise (T-shirts, masks, bands), Laps for Lupus Awareness/Laps Your Waycampaign, a Virtual Event on Oct 11 - 18 and a free virtual Lupus Symposium on November 1, 2020

    About the Lupus Foundation of Jamaica (LPJ)

    Lupus Foundation of Jamaica is a member-based, volunteer run charity established in 1984 and dedicated to improving the lives and outcomes of persons affected by lupus through information, support, advocacy and promoting research in the field.  The Organisation, (as with other similar groups in the Commonwealth), observes October as Lupus Awareness Month, a time when the Foundation ramps up its efforts to sensitise and educate Jamaicans about this disease in an effort to ensure persons affected receive early diagnosis and access to effective treatment and support.


    We are located at 7 Barbados Avenue, Kingston 5
    https://lupusfoundationofjamaica.wildapricot.org/



  • 3 Oct 2020 8:21 PM | Anonymous
    HERE

    Use your camera or smartphone and record yourself answering a few questions and use www.wetransfer.com to send it to kjackson@nivekfilms.com between October 1st and 14th. Your videos should be no longer than 10 minutes long. 

    Disclaimer: Your video is not guaranteed to be selected due to the limited slots available. Your video might be edited to tighten your story. By submitting your video, you have expressly given the Lupus Foundation Jamaica the permission to use your recording for current and future promotions and awareness events conducted by the Lupus Foundation Jamaica.

    Instructions on recording video with a smartphone. at home without any equipment

    WATCH THIS VIDEO

    https://www.youtube.com/watch?v=Y0URmjXWmQA

    Other tips

    Other Instructions

    1. Do not do a selfie holding your camera with your hand. The footage can often be shaky and jarring to the viewer's eyes.

    2. Film in a quiet place away from loud noises like traffic, dogs barking or people shouting.

    3. Ensure your face is lit by turning on a lamp and pointing it toward your face or filming facing a window.

    4. Do not film yourself far away from the camera. You will sound better the closer you are to the video.

    5. Read the questions and familiarize yourself with your answers before recording.

    6. Ensure the video is in focus so we can see you clearly.

    7. Lastly, relax, be yourself and speak from the heart.


    HERE ARE THE QUESTIONS

    • Do you have lupus, or are you closely connected to someone with lupus (share how)?
    • In what ways have you (or your loved one) most been affected by the Covid-19 pandemic?  Or How are things different for you than before?
    • How are you reacting or adapting to these changes?
    • If we were able to get together experts in a room, to provide solutions and tools to address to your most pressing issues related to life during Covid-19 (as a lupus patient/caregiver), what would you most want them to address or share about?”


  • 2 Oct 2020 9:52 AM | Anonymous

    Dear Members and Friends

    It’s that time of year again and Covid-19 will not stop us!  We are all set for this annual season of Lupus Awareness Month in October when we ramp up our efforts to raise awareness about lupus about all over Jamaica and beyond.  Knowledge about lupus saves lives!  And this year there are so many ways for you to get involved!

    FOLLOW OUR SOCIAL MEDIA PAGES on Facebook and Instagram and our Social Media posts!  Join us throughout the month of October for our special features:

    ·        Lupus FAQ (Frequently Asked Questions)

    ·        Motivational Mondays

    ·        Lupus Dos and Don’ts

    ·        Your Story Fridays video shares - real lupus patients share their journey and insights


    PARTICIPATE IN OUR UPCOMING EVENTS!

    Sunday October 4 @ 8:30 am Lupus Awareness Month Church Service at Meadowbrook United Church:  meadunited.org.

    Join us as we launch the Month with worship and praise with the Meadowbrook United Church family via livestream:  Please note that in-person attendance is by special arrangement only, so get in touch with us by Monday Sept 28, 2020 if you need to attend in person!

    Wed Oct 7, 2020 @ 6:00 pm Ask the Expert Live:  Diet & Lifestyle with Lupus:  Your Questions Answered  with Dr Michelle Hamilton, Naturopathic physician and Lifestyle Practitioner.  Text in your questions and be there for the launch of our monthly live programme where an Expert will be on for 30 minutes live to answer all your burning questions, every first Wed at 6:00 - 6:30 pm, streamed live on our Facebook page and YouTube.

    Oct 1 - 14, Covid-19 and Lupus Survey and Vox Pop interview:  We are all experiencing the effects of Covid-19 differently. We want to know how persons with lupus are feeling and coping and what your challenges and needs are.  Complete our online survey and if willing record your answers to our vox pop questions and help make your voice heard!  Results will be presented at our Free Virtual Lupus Symposium on Sun Nov 1.


    Oct 11 - 18 Laps for Lupus Awareness/Laps Your Way Lupus Awareness and Fundraising Campaign with Live Fun Virtual Event!  Covid-19 will not stop us!  We are doing it bigger and better - So sign up and help us promote Lupus Awareness in every part of Jamaica.  Invite your family, friends, and co-workers!  Collect your sign-up sheets, purple ribbons and flyers, or simply share our invitation through your Social media and WhatsApp contacts to our online registration page.  Purchase branded T-shirts, masks, bands and buttons. Do Laps Your Way and share or tag us on your pics, then join us at a Fun Virtual Event for music, workouts for everyone, motivational and health tips, prizes, and surprises!


    Oct 1 - 31 Poster & Print Campaign:  You can get involved in our annual Request our Lupus Awareness Posters and Brochures, and NHF registration forms, to share at our office, church or even your local clinic or doctor's office!  Just contact us and provide your details by Wed October 7.


    Oct 2 - 30 Put on Purple Fridays:  Help promote Lupus Awareness at your workplace by wearing something purple each Friday during October and encouraging your co-workers to join you.  Our branded memorabilia (T-shirts, masks, bands and buttons) and purple ribbons will be available soon through the office or we can arrange delivery for you.  Get in touch!


    Sun November 1:  10:00 am to 2:00 pm:  live Virtual Lupus Symposium :  Back to the Future:  Embracing New Normals in Lupus Management, Research and Life  Registration is FREE!  Hear our International and local experts speak on the Immune System, Lupus & Covid-19, Hydroxychloroquine & the Heart, Precision Medicine in Lupus, Patient-Centred Research in Lupus; Hear results of our Covid-19 Survey and Vox PopThe Way Forward: Life with Lupus during and after Covid-19 - expert panel helps us chart the way forward in areas of work, finance, mental health, relationships, health care and more; all spiced with a little music and humour.  Invite your friends and family and also your health practioners for Continuing Medical Education credits!  Contact us if you need a poster for your clinic and share on your social media

    Let's Do This!  We want to say a huge thank our volunteers for all their hard work in planning this amazing campaign!  But we can't do this alone.  We need more members, volunteers and donations to keep our cause going - to raise awareness, advocate and keep supporting our warriors.  Let's all get involved this month and rally support for our cause!  Let's Join together to Fight Lupus!

    May you be safe, healthy and blessed



  • 15 Jun 2020 12:51 AM | Anonymous

    Five Finger Fundraising Campaign 




    Sponsor Letters 

    If you have one or more potential sponsors, please contact us by WhatsApp, email or telephone with the details and we will create the sponsor letter on your behalf.



    WhatsApp Message Forwarding 

    You can create a message with the particulars of your campaign and forward that message to up to 250 of your contacts and friends. Check out our sample message script below. 



    Facebook Posting and Sharing - 

    Create a facebook post inviting your friends to support your campaign and ask them to share with their friends.  Please see example of Posts below.




    Matching Funds Campaign 

    If you work for an organization of a dozen or more employees, you can ask your employer to join in a matching funds campaign.  If approved, you would make a request of your fellow employees and your company would match the amount collected by using the agreed upon formula. The LFJ will provide the letter to your employer.  See our contact info below.



    Personal Donation Onetime or Recurring

    You can make a pledge of $500 or more JMD one time or monthly recurring payment and our system will remind you when its due.  See the details below.



    Contact Information:

    Email: info@lupusfoundationjamaica.org

    Telephone: Office 876-754-8458 or 876-778-3892 (Voice/Text/Whatsapp)

    Campaign Information

    (1)  To request a sponsor letter - email or call us with the name and address of the potentical sponsor

    (2,3)  Scripts for your WhatsApp and Facebook campaign messages follow below.

    (4)  For matching Funds - Email or text us with the name of the company, the name of the manager, his or her title along with the company address.  Our letter will detail how the campaign works along with the start and end dates.

    (5) Do donate, go to our website, click on donate and either use one of the donation buttons or make a payment from your bank account. All payment information has been posted on our Donate page. Click Donate now. Also, let us know how much you plan to donate so that we can project our income.

    You are not alone

    Lupus Foundation of Jamaica


    WhatsApp sample script

    Hi there! This is (Your name).  You are a valued member of my friends and family network so I writing to let you know that I am a member of the Lupus Foundation of Jamaica (LFJ) because many of my friends and family has been impacted by Lupus.

    I am participating in a fundraising campaign to ensure that our programs and services continue to be available to existing Lupus patients and to newly diagnosed persons.   The LFJ is a member sponsored charity and donations have slowed due to Covid-19.

    With your gift of $500 JM or $5 US or more by June 30th 2020, we will reach our goal of $4 million dollars this year.

    Your kind consideration is greatly appreciated.  Please text me to say "I am in", so I can keep track.  You can click this link to donate securely online right now.  If you are paying online please use the Add Note section of the payment window to say: On [your name]'s behalf. 


    Facebook sample script

    Hi Friends:

    You are a valued member of my friends and family network so I writing to let you know that I am a member of the Lupus Foundation of Jamaica (LFJ) because many of my friends and family has been impacted by Lupus.

    I am participating in a fundraiser to ensure that our programs and services continue to be available to existing Lupus patients and to newly diagnosed persons.   The LFJ is a member sponsored charity and donations have slowed due to Covid-19.

    With your gift of ($500 JM $5 US) or more by June 30th 2020, we will reach our goal of $4 million dollars (JM) this year.

    Your kind consideration is greatly appreciated.  Please message me to say "I am in", so I can keep track.  You can click this link to donate securely online right now.

    If you are paying online please use the Add Note section for the payment window to say:On [your name]'s behalf. 


  • 9 May 2020 9:34 PM | Anonymous

    The World Lupus Federation conducted a global survey on how lupus affects physical function and quality of life. The survey consisted of 11 questions and responses were submitted from April 10 to April 26. More than 4,000 people responded to the survey with over 3,500 complete responses. Participants from more than 70 countries completed the survey. The survey results highlight that lupus impacts physical function and quality of life. Topline results of the survey include:

    • Nearly 7 in 10 participants responded that lupus impacted mobility, including 1 in 10 that needed a cane or another apparatus. Overall, younger people with lupus report being less impacted by physical functioning or social impact compared to older people with lupus.
    • Nearly 1 in 5 participants responded that lupus significantly affected (“limited a lot”) their ability to perform childcare or care for your family. 3 in 5 participants responded that lupus in some way limited their ability to go up and down stairs at a normal pace.
    • Nearly 3 in 4 participants responded that they are physically less active than other persons their age who do not have lupus.
    • Nearly 9 in 10 participants responded that lupus interfered with normal social activities with family, friends, neighbors or groups. Nearly 4 in 10 responded that lupus interfered “quite a bit” or “extremely.” 
    • Nearly 9 in 10 participants responded that pain interfered with normal activities, including both work outside the home and housework. 3 in 10 responded that lupus interfered “quite a bit” or “extremely.”

    Overall, people with lupus who report their lupus diagnosis taking two years or more experience higher physical burden and social impact than those who receive their diagnosis within 12 months. Those with skin lupus (DLE or other) are less affected physically, whereas those with SLE experience highest impact, particularly with pain. One thing all people with lupus seem to experience, despite different types of lupus, is difficulty getting out of bed.

    Survery results can be found here.
    Source: https://worldlupusday.org/2020/05/07/world-lupus-federation-global-survey-2020-topline-summary

  • 6 May 2020 4:41 PM | Anonymous

    World Lupus Federation issues global report for World Lupus Day highlighting the life-altering effects of lupus and the challenges people with lupus face every day.

    (Washington DC) Almost half (43%) of people living with lupus responding to a 2017 poll indicated that they worry the most about physical inactivity and social isolation due to the debilitating effects the autoimmune disease has on the body. Nearly half (47%) of the participants also felt that the impact lupus has on daily living is most misunderstood by their physician, while almost one-third (30%) believed that the emotional impact is most misunderstood.Almost half (47%) of those who responded to the World Lupus Federation (WLF) poll indicated they want better management and treatment options available to them through their physician.

    Only one treatment developed specifically for lupus has received regulatory approval since the 1950’s.These opinions are included in the “Lupus Knows No Boundaries e-Report,” developed through a collaboration between the WLF GlaxoSmithKline (GSK) and for World Lupus Day (May 10).

    The report brings together firsthand experiences of people with lupus, their advocates and those who treat them, to tell the real story of lupus, highlight-ing the ongoing physical and emotional needs of those who are affected by this incur-able disease. The full report is available online at worldlupusday.org.

    “I first came to know lupus through my childhood friend, Lucy Vodden, about whom the song Lucy in the Sky with Diamonds was written,” said Julian Lennon, photographer, author, musician, philanthropist and global ambassador for the Lupus Foundation of America. “It was Lucy’s struggles that opened my eyes to how devastating the burden of lupus is on millions of individuals and their families.”

    Shannon Boxx was a member of the United States women’s national soccer team, winning three Olympic gold medals before her retirement in 2015. But for most of her career, she was secretly carrying the burden of a lupus diagnosis. “I decided to speak publicly about lupus because I was tired of hiding it. I was at a point in my career where I knew I probably wasn’t going to play much longer and I felt I had a real responsibility, being in the public eye, to talk about lupus and bring more awareness,” said Boxx.

    Public awareness of lupus remains stubbornly low, contributing to public misunderstand-ing and misconceptions about the disease. A 2016 global opinion survey* found that over half of the respondents (51%) were unable to identify the physical complications associated with lupus and more than a third (35%) did not even know that lupus was a disease.

    The World Lupus Federation, a global coalition of lupus patient groups, is working to raise the public profile of the disease.

    “We’re calling for everyone to unite and take action on behalf of those affected by lupus,” said Sandra C. Raymond, President & CEO of the Lupus Foundation America which serves as the Federation’s Secretariat. “By shining a light on lupus we can ensure that friends and family, healthcare professionals, employers, government officials, health insurers and pharmaceutical companies are aware and informed of the many and varied challenges that people with lupus face.”

    “The e-Report and Twitter Poll findings show that there is more that can be done to raise awareness, understanding and prioritization of this debilitating disease and to give patients the confidence to speak up about the impact of their symptoms,” said Dr. Alex Liakos, Global Medical Affairs, GSK. “At GSK, we are delighted to have been able to collaborate with the World Lupus Federation and look forward to continuing to support the needs of those living with lupus in future campaigns.”

    “It’s our responsibility to get involved and do whatever we can to help fight this unpredictable and misunderstood disease,” said Julian Lennon. “It is my goal to keep fighting and bringing attention to lupus so we can raise the money needed to develop better treatments, provide support to people affected and fund the research that someday will bring an end to lupus and its brutal impact on people’s lives.” 

    Source: https://worldlupusday.org/news/inactivity-isolation-and-impact-on-daily-life-are-top-concerns-of-people-with-lupus/

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