22nd May, 2013
Researchers Stop Vitiligo Progression! New hope for millions worldwide
Researchers have been increasingly enthusiastic about harnessing the body’s own immune system to fight cancer and other diseases, and new research now shows that established drugs that use this approach may be effective in stopping vitiligo, a chronic skin disease which affects close to 100 million people worldwide.
Dr. Igor Korobko, Chief Scientific Director of the non-profit Vitiligo Research Foundation, has reported a major breakthrough in vitiligo therapy development at the 2013 EADV congress in Krakow. Data released on May 23 from a preclinical study of a Pharmsyntez drug, sold under the trademark Neovir, has shown positive results in arresting vitiligo lesion progression in 73.3 percent of patients with an active form of vitiligo. In four of the 60 patients taking part in the study, vitiligo lesions re-pigmented significantly. (abstract 23 May, 2013)
Sodium oxodihydroacridinylacetate (ODHAA) is the active ingredient in Neovir, with an immunomodulatory capacity that is currently being used to normalize impaired immune system functions for various conditions. Serum tumor necrosis factor-alpha (TNF-) and interleukin-6 (IL-6) levels were used as predictive and end-point markers during the trials. The treatment was well tolerated by patients, and no side effects were observed.
Researchers from the VR Foundation study did not compare the drug with a control placebo or other treatment modality, and it is, as yet, unclear how long the effects will last, though there are signs that for many patients, it could be up to a year or more. It is also not clear yet whether the drug will work for segmental vitiligo, which is often seen as a distinctly different form of the disease.
This study, and others on immune system drugs, will perhaps be the most closely watched items in the Vitiligo Research Foundation’s drug re-purposing research activities.
The Foundation’s CEO, Yan Valle, noted that today scientists know the molecular cause of 4,000 diseases, but treatments are available for only 250 of them. Systematic drug development is lagging behind for many rare and complex diseases. Drug re-purposing offers some effective and cost-efficient solutions. In a way, we are teaching old drugs new tricks.
Mr. Valle went on to add, “We are focused on off-label testing of approved drugs that are already on the market, and thus are already available to patients immediately. Neovir is cheaply available without prescription across the former Soviet Union, it is very affordable and has an excellent safety profile,”.
At the moment it is still unclear if or when this drug will be available in the United States.
Coming a month before World Vitiligo Day on June 25 (25june.org), it is another positive sign that there is hope on the horizon for vitiligo sufferers.
Africa Vitiligo Conference October 18 to 20, 2012 Lagos
VITSAF is planning to hold its first-ever Africa Vitiligo Conference, at the Mega Chicken Restaurant Banquet Hall Lekki, October 18 to 20, 2012. The conference, which is planned “for patients & stakeholders, by patients”, will provide vitiligo and related conditions patients with access to the latest information and research results, time with their affiliate groups, and opportunities to get to know other vitiligo patients and how they cope. We are targeting to have 250 people attend and there will be keynote speakers as well as break-out sessions on Seminar – Understanding Vitiligo, Confidence building workshop and general information on taking care of your skin.
Here’s what we’re planning.
- Symposia with information for patients on vitiligo, management and self-help guide
- Symposia on new research, what’s new, updates by renowned vitiligo researchers’ & dermatologists
- Stimulating and informative keynote speakers
- Success Story – Live your best life
- Psychological/Psychosocial challenges of living with vitiligo
- Communicating Vitiligo Awareness and Enlightenment Effectively
- Exhibit hall showcasing products and services for vitiligo patients
- Vitiligo Biobank , Psychological and Genetic Studies in Nigeria
If you’re a vitiligo patient, a colleague, friend, family member especially if you live in Nigeria and across Africa, you’ll not want to miss this event! It is open to medical community, Ministries of Health, health workers, all vitiligo patients as well as their family members who understand that being a vitiligo and or skin patient can be frustrating and trying at times. We encourage patients from across the country to attend and expect there to be quite a number of people about 100 with different patterns of vitiligo and other 150 health workers, family and friends.
Sometimes you just need to meet others who truly understand what it is to live with a skin condition. This conference will provide that opportunity – to be able to be totally free to discuss your vitiligo, skin, self-help guide, treatment options available and the impact that vitiligo condition has on your life.
Details of Africa Vitiligo Conference on
Early Bird Conference Registration now 25th September, 2012
Please note that our Early Bird Conference Rate of N30, 000 – $200 (on or before September 25, 2012). This includes a ticket to Appreciation Purple Dinner banquet on October 20th 6pm at same venue.
Scholarship, Financial Assistance
Did you know? Scholarship is available!
Financial assistance? We are making effort to assist some vitiligo patients in Nigeria who cannot afford to attend.
If you are a Vitiligo patient, living outside Lagos and a financial member of VITSAF who cannot afford transportation to Lagos, do apply to be considered for financial assistance to attend our Africa Vitiligo Conference this October in Lekki, Lagos. Click here to apply or call +234702 516 5280.
You can support us by providing some financial assistance for those who really need to come, but cannot afford to. For more information about product demonstration, to find be a sponsor and volunteer at the exciting event, please contact us at +234702 516 5280 or e-mail vitsaf@vitsaf.org.
June 18, 2011
FOR IMMEDIATE RELEASE:
Vitiligo Purple Fun Day – Vitiligo Support and Awareness Foundation (VITSAF) is hosting its Vitiligo Awareness Day (a memorial to Michael Jackson) at the Silverbird Galleria in Victoria Island, Lagos on Saturday, June 25, from 4pm to 8pm.
It is a day set aside to create extensive awareness on Vitiligo and a day dedicated to all living with Vitiligo globally. A memorial to Michael Jackson, who lived with Vitiligo till his death and who managing his Vitiligo became one the most controversial issues.
Dress code for this event is Purple. Many Nigerian celebrities has confirmed attendance and still counting.
Compere – Steve Onu (Yaw of Wazobia FM)
Confirmed are -,
• Julius Agwu
• Funny Bone
• Senator
• De one
• Xplicit Dance groups,
• RGK
• DJ Stramborella
• Fashion Walk with Damian Exclusive and
• Publicizing of our awareness Video Productions on Nigerian TV Stations and hopefully Kenya on 25th June. The production -
i. More to Life – A Documentary on Vitiligo and
ii. Tales of Vitiligo – TV Fillers
According to the Executive Director, Ogo Maduewesi the lead advocate and campaigner of World Vitiligo Day – Vitiligo Awareness Day is a great need because Vitiligo is a very disfiguring, devastating condition which can affect anyone. In a society obsessed by appearance and where physical appearance is celebrated you can feel just helpless when your appearance is threatened, often stigmatized, traumatized, and ostracized. Children are frequently teased and ridiculed by their peers. Adults experience low self-esteem, job discrimination and it interferes with relationships and marriage prospects.
The current therapy for Vitiligo focuses on halting the Progression of the depigmentation with topical immunomodulators and encouraging repigmentation with phototherapy. However, success rates of these therapies is dramatically low, variable, and not permanent. Therefore, new therapeutic approaches are warranted. With many Vitiligo patients responding poorly to the current therapies, more focus should be directed to improve non-medical consequences of Vitiligo that include
Extensive awareness, enlightenment and education,
camouflages make-ups,
self-image support,
Availability and access to Vitiligo information for all,
General support and care, to name a few.
Above all extensive Vitiligo education, awareness and enlightenment campaign is on top priority for acceptance of the victims, Vitiligo patients needs to be accepted and treated equally without any form of stigma, discrimination and segregation to enable them take advantage of other self-help like camouflage make-up, image building programs etc. Awareness will bring about a better understanding of the general public, attention and care within the medical community and Positive living of the patients.
VITSAF is a not-for-profit patient – driven organisation incorporated in Nigeria and working around Africa, Passionately concerned about the needs of persons living with Vitiligo, helping ameliorate the agony people suffer as a result of turning from black to white.
We invite you all to join us in Vitiligo Purple Fun Day a memorial to Michael Jackson (most famous man that lived with Vitiligo and widely misunderstood about his Vitiligo)
This event is proudly supported by Julius Agwu Foundation for Youth (JAFFY), Silverbird Galleria, Dr. Femi Olaleye (WISH FOR AFRICA, UK) and many more.
- Ends -
For more information please contact Ogo @ Vitiligo Support and Awareness Foundation, 51 Oyekan Road, Off Akerele Street, Surulere – Lagos Tel: 0702 516 5280, 0806 363 8030, Email: vitsupng@gmail.com, Website: www.vitsaf.org
Monday May 30, 2011 – For immediate release
Vitiligo Support and Awareness Foundation (VITSAF) announces its re-launch of Vitiligo ‘Project 1,000’ Vitiligo Support and Awareness Foundation (VITSAF) announces the re-launch of its ‘Project 1,000’ a fundraising project to raise funds for its operation, huge projects and replications. According to the Executive Director, Ogo Maduewesi, ‘Project 1,000’ is a strategic fundraising project where we appeal and anticipate for voluntary donations of minimum of N1, 000 from individuals and all stakeholders to the Vitiligo cause. Vitiligo is a multifactorial skin depigmenting disorder with an etiology (the cause and progress of the disorder) not well understood. Most devastating for the patient with Vitiligo are the social, psychological, emotional and sexual ramifications of these disfiguring disorders. We truly offer desired help and a shoulder to lean on! We are appealing for funds for our pressing Needs to carry out our projects and replication of our work across Africa. Because we believe in everyday people, we are appealing for minimum of N1, 000 from everyone to enable us impact more lives positively as truly our work goes beyond just persons with Vitiligo, but anyone with image alteration (the disfigured) etc. With many Vitiligo patients responding poorly to the current therapies, the negative effects, struggle on how to live with such disfiguring conditions in a society where it is still misunderstood due to beliefs, we are directing more focus to the following with the funds -:
- Setting up our one stop place for Vitiligo (for West Africans) –A state of the art Vitiligo Resource Centre for Vitiligo, General Skin Health, the disfigured to improve non-medical consequences of Vitiligo that include, make-ups & camouflages, self-image support, Vitiligo lifestyle products, to name a few.
- Securing and running our Secretariat
- Extensive Awareness, Enlightenment and Education
- Establishing VITSAF Vitiligo Support Groups (VVSG) offices in 6geopolitical zones in Nigeria, Ghana and Kenya
- General Operating Support
Ogo Maduewesi, the Executive Director calls on everyone, philanthropic concerned members of the public to please support us with a minimum of N1, 000. We have tried to make it easy for everyone to donate online with ATM cards on www.vitsaf.org/donate.php, it’s highly secured and safe. One can also make direct deposit into our GTBank Acc name – Vitiligo Support and Awareness Foundation, Acc No. 213 775274 110 and for Dollar – 213 775274 210 VITSAF is a not-for-profit patient – driven organisation incorporated in Nigeria and working around Africa, concerned and passionate about Blacks turning White. The only Vitiligo, Skin and the Disfigured focused organisation in West Africa presently. The Foundation was founded about three years ago with intending headquarters in Abuja, field office in Lagos, Vitiligo Support group offices in six geopolitical zones across West Africa and beyond. I hope you will JOIN us as we unite our collective Voices and Resources. Even though there are many endeavours upon us, we are confident that together we will succeed in accomplishing our goals. Tweet
