Vitiligo news
VITSAF Conference 2012
- VITSAF Conference 2012
Loving yourself
It's kinda hard to love yourself if you hate your body (or even some part of it). And most women and most of us with Vitiligo hate some part of their body at
some point.
And every woman can always use a little more love. So with that in mind, I wrote you a \"Love Letter\" (PDF). It's short, to the point and I even painted you some pictures. The Pleasure Nutritionist Daphne http://thepleasurenutritionist.com
1st Int’l Conference on Vitiligo in West Africa
1st Int’l Conference on Vitiligo in West Africa
Theme – Naturalistic Approach to Vitiligo and Skin imperfections® (NAVSI)Patient Centered Conference
22-24 March 2012 in Lagos, Nigeria
Dear Friends and all Concerned,
It is our very great pleasure to invite you to the 1st biennial Vitiligo Conference that will be held in the commercial city of Lagos, commercial city of Nigeria.
The 1st Vitiligo conference will be interesting! Like everyother conference held in different places in the World, for the first time in the history of Vitiligo Conferences we are organizing a patient-centered conference tackling the direct and primary need of persons distressed with Vitiligo. The scientific committee will comprise of Nigerian dermatologists and their counterparts.
The theme of this Congress is “Naturalistic Approach to Vitiligo and Skin imperfections® (NAVSI)”. This emphasizes the need to learn natural ways of managing and living with Vitiligo and the central importance of skin in our health and well-being. We expect Vitiligo patients and their families from across Africa, Dermatologists, and Clinical Psychologists, State and Federal Health Ministries and Health organization. Our keynote speaker is Lee Thomas, we are having some renowed resource person’s in area of natural management which includes Dr. Wanakee Hill (a Dr. in Naturopath), Dr. Andrew Thompsons, a clinical psychologist who has been working in area of appearance amongst others. Nigerian, regional and local speakers will provide top level knowledge in basic as well as clinical dermatology, Vitiligo and Skin imperfections, cosmetic dermatology. During the break out Workshop sessions, delegates from health organizations and ministry of health will have the opportunity to learn and understand all the basics of Vitiligo as a benign and yet chronic and miserable condition with the leaders of dermatology and medical science in Nigeria.
Join us in Lagos, March 22-24th, 2012 for what promises to be a wonderful, revealing, educative and a fulfilling event!
Details NAVSI
VRF BioBank opening
MEDIA ANNOUNCEMENT- FOR IMMEDIATE RELEASE
February 2, 2012
VR Foundation
World’s First Dedicated Vitiligo BioBank
VR Foundation is proud to present world’s first dedicated Vitiligo BioBank – a repository of genetic material from patients and related unaffected individuals, together with associated health records.
The Vitiligo BioBank aims to promote coordinated large-scale biomarker discovery and validation, facilitate the identification of susceptibility genes, environmental and lifestyle factors and etiological pathways for vitiligo, and aid the design of treatments for this disease.
The BioBank currently holds 150+ samples, including 75+ DNA profiles, with scheduled weekly additions. Vitiligo BioBank provides storage facilities for hair follicles, co-morbid diseases material, and the physical collection of material that may be vulnerable to disposal through completion of research projects.
The Vitiligo BioBank is operated by the Center For Innovative Biotechnologies ALLELE based in Moscow, Russia. Importantly, it will work with the active participation of the Vitinomics.net patients’ community, and share benefits with them.
VR Foundation is a non-profit philanthropic organization funding and fast-tracking medical research globally, firmly committed to curing Vitiligo.
For further information:
VR Foundation (www.vrfoundation.org – www.vitinomics.net )
General inquiries: Alessandra Fabbri Palmieri (a.palmieri@vrfoundation.org)
Telephone Number: +39 328 6214588
Scientific inquiries: Dr. Igor Korobko, Chief Scientific Director (i.korobko@vrfoundation.org)
Business & administration matters: Dr. Yan Valle, VRF CEO (yan@vrfoundation.org)
World Vitiligo Day – June 25th update
World Vitiligo Day – June 25th, 2012
Hello Colleagues and Vitiligo friends around the World,
A Happy New Year!
I come to you with good news on our campaign and advocacy for World Vitiligo Day – June 25th, we are making progress. For those who are coming in contact with this advocacy and campaign for the first time, it is our collective effort for extensive global Vitiligo Awareness to help ease the psychological effects, to put us out of misery and silent excruciating pain majority of us go through, effectively educate the public and bring Vitiligo cause to World center stage. More Vitiligo organisations are identfying and joining forces with us..
This campaign idea is worthy causes that will go a very long way in helping ease all the misunderstanding of the general public and at same time effectively educate the public while improving our Quality of Life (QoL) and self-esteem as well as self-confidence. “The more we can get people engaged in understanding what Vitiligo is, the better it is for those who are living with it.” – Mary Cleveland, Executive Director, NVFI.
In 2011, we marked the first global Vitiligo Awareness Day (as we choose to call it till we get June 25th approved by UN officially as World Vitiligo Day) in Nigeria, Beyond Vitiligo in South Africa, Vitiligo Support, Kenya, Vitiligo Bond, USA, My Vitiligo World, Indonesia, Vitiligo persons and the public on social media and across the globe. View 2011 World Vitiligo Day – June 25th on Facebook page http://www.facebook.com/pages/World-Vitiligo-Day-June-25th/191074134256085, http://youtu.be/jUQ40JDR8pA, http://www.facebook.com/BeyondvitiligoSA, http://youtu.be/5dpFxllcLxA, http://www.facebook.com/media/set/?set=a.1408413106866.41759.1728610745&type=3, http://www.facebook.com/groups/myvitiligoworld/ etc……
We are continuing effort as the ultimate goal is to get June 25th approved officially by UN as World Vitiligo Day, this is our cause and we alone can make it happen. In 2011 some organizations showed interest but it was late to plan an event, we are 5months away and it’s fairly enough time for us to plan towards an event for June 25th, 2012.
What do you suggest as a Theme for World Vitiligo Day – June 25th, 2012? Please share on facebook page http://www.facebook.com/pages/World-Vitiligo-Day-June-25th/191074134256085, twitter @vitsaf so we can all discuss it and run with the most suitable.
There are two petitions online for World Vitiligo Day – June 25th http://www.petitions24.com/signatures/world_vitiligo_day_-_june_25th and http://www.change.org/petitions/help-vitiligo-bond-establish-a-vitiligo-world-day-on-62512, please do sign if you haven’t and please share with friends, colleagues, families, media and more.
Our target is 100,000 signatures by June 2012, am very positive that we can achieve this if we collectively drive it, with no doubt I am very sure that we are taking this up more than ever before.
Please send all your suggestions, creative ideas and comments to the facebook page http://www.facebook.com/pages/World-Vitiligo-Day-June-25th/191074134256085.
More Vitiligo organisations are identfying and joining forces with us..
Together we CAN achieve!
Very Sincerely yours
Ogo Maduewesi
vitsupng@gmail.com
+234702 516 5280
VITSAF ED receives Indulge Wellness Award!
Indulge Wellness Award
On the 5th of November 2011, on the 3rd Indulge Wellness Award Dinner, Ogo Maduewesi, our founder/Executive Director received Indulge Wellness Award from Indulge Nigeria Limited (www.indulgehealthandfitnessgroup.com ), a healthy living focused and advocacy company, positioned to ensure that you feel and look great in life.
Ogo Maduewesi Wellness Award in the category of Self-Esteem and Confidence on a rationale – for your commitment to Vitiligo Awareness Campaign restoring confidence and self-acceptance.
Ogo proudly displays her Award
The Award is about promoting health, confidence, and wellness. Indulge calls on you to join us in celebrate companies, individuals and non-governmental organizations for supporting healthy lifestyles in Africa.
We congratulate Ogo and VITSAF, we say to you ‘this is the beginning and we wish you many more in nearest future’.
VITSAF Publicity
VITSAF on GlobalGiving UK
VITSAF accepted by GlobalGiving UK to participate in its Gateway Challenge Nov 21 – Dec 21, 2011
Hi friends and supporters,
I hope this finds you well. Firstly, let me say a big thank you for all the support that you have given VITSAF in the past – your support has helped move Vitiligo Awareness and Support forward, it has helped us give hope to someone with Vitiligo through the awareness programs on different mediums.
I also wanted to tell you about an exciting new opportunity for VITSAF. We have been accepted by GlobalGiving UK to participate in its Gateway Challenge, a fundraising opportunity for nonprofit organizations in which we get the chance to compete for bonus funding prizes.
To pass the Challenge, we must raise £2,000 from 50 donors between the 21st November and the 21st December. If we meet this target, we’ll get a permanent spot on GlobalGiving UK’s fundraising website, where we have the opportunity to benefit from corporate relationships, exposure to a new donor network, and access to dozens of online fundraising, support and training tools.
In addition, we could earn up to £2,000 in bonus prizes if we raise the most money and get the highest number of donors!
We are aiming not only to pass the Challenge, but to raise a total of £9,950. This will enable us to offer that much needed support to persons living with Vitiligo in Nigeria through an Innovative Resource Center which will offer rich information/knowledge through Library and Bookshop to skin camouflage clinic to lifestyle products (Vitiligo helpful products) to confidence and image building workshops/programs, Wellness and healthy living are some example of what we will offer in the Center. It will also be an avenue for studies on general skin health. This project is developmental (sustainable model for VITSAF). We do not to wish to continue pleading for funds on every project we want to execute.
If we’re to reach this target we’re going to need your help spreading the word so please share this opportunity with your friends and family.
Thank you, as always, for your continued support. We are counting on you and your support to reach this target and surpass it.
Best,
Ogo Maduewesi
ED, VITSAF
vitsupng@gmail.com
234702 516 5280
Do you suffer from vitiligo?
Do you suffer from vitiligo?
The Henry Ford Hospital Department of Dermatology is conducting a clinical study for a new treatment in vitiligo: an experimental drug to be used in combination with narrowband ultraviolet B (NB-UVB) phototherapy. We are looking for adult patients suffering from non-segmental vitiligo on the face and the body for less than 5 years who have not received any NB-UVB phototherapy in the past 6 months. The study is composed of a 6-month treatment period with NB-UVB light treatments, performed 3 times a week, with or without administration of the experimental drug. Thereafter, there will be a 6-month follow-up period with one visit to the Department of Dermatology every 2 months.
The entire study will last about 1 year and includes NB-UVB light treatment and 11 visits to Department of Dermatology. Participation in the study is free and travel expenses will be reimbursed. Your information will be kept confidential.
Are you interested?
If you are interested, please contact:
Oma N. Agbai, M.D.
Henry Ford Medical Center
Department of Dermatology
3031 W. Grand Blvd., Suite 800
Detroit, MI 48202
Research Office (313) 916-6964
Fax (313) 916-5334
email – oagbai1@hfhs.org
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Thank you so much for your time and consideration, and have a great day.
Why Vitiligo World Day for Awareness?
The skin is the outer image of every individual, it is the ultimate accessory, and it’s what we are wrapped in. When there are significant changes or damages to a person’s outward appearance, this has extreme social, emotion, psychological and mental effects on the individual. They may suffer from stigma and may feel isolated from their friends and family. Vitiligo is one condition where a significant change in appearance (white patches and spots) affects negatively a person’s outward appearance. It is a condition in which people lose melanin – the pigment that gives skin its color – resulting in white patches of skin.
A healthy skin is essential for a person’s physical and mental well being. It is an important aspect of our sexual attractiveness, determinant of physical and level of social acceptance, a sense of well being and a sense of self confidence. The skin is the largest and most visible organ of the human body. Hence skin disorders & diseases, when present, distort the body structure profoundly.
What is the solution when the skin disorder distorts the body structure and image profoundly? Especially in chronic conditions like Vitiligo, Psoriasis, Lupus etc. Most times as I have experienced the affected seem to be very comfortable with each other in support group meetings and gatherings including social sites (a place to bare it all and be understood), but I ask a question, if we have 24hours in a day and we spend like average of 3hrs on social site in the midst of people with like conditions, feeling comfortable with ourselves, what happens and whom do we usually spend the rest hours with? Is it with families or the yet ignorant general public? Do we go back to face those who do not understand what we actually have? Wouldn’t it be better to equally make anywhere we are conducive for us by making sure we educate people around us to understand the condition and its effect?
Getting worked up and calling people who stares, stigmatizes, segregates as well comments nastily names cannot help or change anything, getting upset with the ignorant public’s reaction cannot change anything either, maybe We Can, when we make it a point of duty to educate at least one person a day or at least try our best in creating awareness no matter how small in our localities, drops of water makes an ocean. It’s simply our call and we just have to do something about it, make room for better understanding of the condition to alleviate our distress and misconceptions. Unfortunately it’s not such a condition that people who are not living or affected with it takes up as a cause to campaign for.
Global Vitiligo Awareness is very important. Why Global? Because till we achieve Vitiligo Awareness Day or World Vitiligo Day where a day will be marked in all Countries of the World to talk about Vitiligo (like we do have World AIDS Day, Kidney Day, Cancer Day and month, Leprosy day etc), much awareness may not be achieved as some regions have no project on Vitiligo awareness and support yet have people distressed by it, understanding very well that everyone cannot be that brave and bold to bare it all.
I strongly propose for June 25th as Vitiligo World day in memory of Michael Jackson who was a victim of Vitiligo, but widely misunderstood and mocked about a condition he had no control over. MJ is such a Legend and a Star that I don’t think that having Vitiligo World Day in memory of his Death date is out of place; today people already refer to Vitiligo as Michael Jackson’s disease.
We continue to strive and make effort till we achieve, together we can achieve, irrespective of race, color and continent. Vitiligo binds us all together!
Thank you and do remember that ‘no-one can bring you down without your permission’!!!
Top Nigerian Celebrities endorses Tales of Vitiligo (TV Fillers)
We are delighted and grateful to Nigerian top celebrities who endorsed our TV Fillers titled Tales of Vitiligo. They are in person of
- Onyeka Onwenu
- Francis Duru
- Julius Agwu
- Rita Dominic
- Stephaine Okereke
Follow the links below to view all the videos
http://www.youtube.com/watch?v=v_wBWmewlhE
http://www.youtube.com/watch?v=HiwbYbHLnSA
http://www.youtube.com/watch?v=svYjaVMkHNw
http://www.youtube.com/watch?v=Ll9MA2Wefqo
http://www.youtube.com/watch?v=yLTOcCgET00
The fillers are basically for Vitiligo awareness and enlightenment; it exposes to the general public everyday life challenges and living of a typical Vitiligo person. Vitiligo is said not to be life-threatening by the medical community and the society, but I ask with such stigmatization, segregation and stares, what is such life subjected to? Suicide or Happy living?
VITSAF is really so blessed to have you all identify with us, we have nothing to offer you all, but pray that Almighty God will reward you all abundantly, Amen!
Our special thanks goes to Izu Ojukwu who helped greatly in making this dream a reality, we are so grateful to have him identify with the cause from onset even when people were skeptical.
Once again we are so grateful to NNPC Chevron Joint Venture for being the very first organization to fund VITSAF’s project.
Ogo Maduewesi