Global Albinism Alliance - Pilot

04/12/2020

If you have the soul of an artist, then you might be interested by this art contest. It's open to all, and this year's theme is "Sensitive skin".

ART CONTEST - YOUR TALENT HAS NO LIMITS!!

Dear community, we are proud to open the new edition of our drawing competition The story of my skin.

This year, the theme is "Sensitive Skin"

Send your artwork by 28 February 2021!

For more information www.thestoryofmyskin.org

OPEN TO ALL!

#dermatology #skin #patients #artcontest #drawingchallenge

31/08/2020

We join many friends around the globe in sadness at the news of the passing of Mwimba Texas, wrestler and great activist for the rights of albinos in the DRC. Our thoughts are with his family and friends.

There is so much to tell about him and I don’t know where to start really…

He was born and raised in the province of Bas-Congo in Congo DRC with a medical condition that determined his life: albinism.

Being a person with albinism in many part of Africa is not the best gift life could grant you. Although, the Ndundus (albino in Lingala) in the Congo are better off then their Tanzanian and Burundian counterparts - killed and mutilated by witch doctors - they are stigmatised and discriminated by the congolese society.��But that did not stop Mwimba Texas who, from a young age, developed a taste for martial arts, self defence, tactical and wrestling (a popular sport in DRC).

Over his 30 years of carreer, he fought 650 wrestling fights and won 646 of them. He revolutionised the wrestling world in DRC by teaching “classical wrestling where only strength, technic and intelligence ruled the gam" as a mean to end end up Vodoo wrestling.
In the 90s he launched what he called “socio-humanitarian wrestling” and travelled in DRC to visit military camps, penitentiaries and hospitals to perform wrestling matched in order to brighten up the days of the ones in need and offer them essential goods and food.

In 1998, he set up the Mwimba Texas foundation to help PWA in DRC and in Africa by using his notoriety to change the perception people had about albinism. And he was very successful at it! He was funny, witty and determined! He inspired me to create the White Ebony Project and I dedicated a whole chapter of my book “White Ebony” to him because he fought all his life to strengthen the rights of the oppressed…

Today, I learnt the very sad news: Mwimba Texas passed away. I am sure the whole country is grieving as I am.

Rest in peace dear Mwimba.

----------------------------
Par où commencer…il y a tellement à dire à son sujet..

Il est né et a grandi dans la province du Bas-Congo avec un condition médicale qui allait déterminer sa vie: l’albinisme.

Malheureusement, naître atteint d’albinisme en Afrique n’est pas un cadeau du tout. Et bien que Ndundus (albinos en lingala) s’en sortent un peu mieux que leurs frères Tanzaniens ou Burundais par exemple -tués et mutilés par les sorciers - ils continuent d’être rejetés et discriminés par la société congolaise.

Mais ceci n’a jamais arrêté Mwimba Texas, qui depuis son plus jeune âge s’est intéressés à l’art martial, la self-defence, la lutte et le catch (sport très apprécié en RDC).

Au cours de ces 30 ans de carrière, il a combattu 650 fois et à remporté 646 victoires. Il a révolutionné le monde du catch en RDC en instaurant “un catch classique où seul la force, la technique et l’intelligence dominent le jeu” afin de mettre un terme au catch fétichiste.
Dans les années 90, il a lancé ce qu’il a baptisé “le catch socio-humanitaire” et à traversé le pays pour organiser des matchs dans les camps militaires, les pénitenciers et les hôpitaux afin d’égayer le quotidiens des plus démunis.

En 1998, il a fondé la Fondation Mwimba Texas en mettant sa notoriété au service des personnes atteintes d’albinisme en RDC et en Afrique pour changer la perception que la population à sur cette condition médicale. Et ce fût un vrai succès! Il était drôle, il avait de l’esprit et il était déterminé. ll m’a inspiré à créer le projet Blanc Ebène et je lui consacré tout un chapitre dans mon livre Blanc Ebène parce qu’il a dédié sa vie à se battre pour le respect des droits des personnes les plus oppressées…

Aujourd’hui, j’ai appris avec beaucoup de tristesse que Mwimba Texas nous a quitté! Je suis certaine que le pays entier est en deuil comme je le suis…

Repose en paix cher Mwimba…

30/07/2020

We have just closed our worldwide survey on albinism support groups and the Global Alliance project. Responses came from an impressive total of over 140 organisations, from more than 75 countries.
Many thanks to all of you for your contributions and support!
A report will be issued later this year.
If you are an albinism group leader, have missed the deadline, but still wish to take part in the survey, please contact us at [email protected].

26/06/2020

Survey on Global Albinism Alliance

The Pilot Global Albinism Alliance has just launched a worldwide survey on albinism organizations and on the future of the alliance.
It is open to all albinism organizations worldwide, registered or not, community-based, local, national or international.
If you are a leader of an albinism organization, we want to hear from you! So, don't wait a second and fill out our survey today! It shouldn't take you more than 20 minutes.
The questionnaire is available in four languages. Just choose the one that suits you most!
English: https://www.surveymonkey.com/r/63JDJR5
French: https://www.surveymonkey.com/r/LJ2P9X9
Spanish: https://www.surveymonkey.com/r/M5HTF5X
Portuguese: https://www.surveymonkey.com/r/M5HTF5X
Please note that this questionnaire is not made for individuals and should be filled out ONLY by representatives of albinism organizations.

Take this survey powered by surveymonkey.com. Create your own surveys for free.

10/06/2020

Get ready to celebrate with us the 2020 International Albinism Awareness Day!
It's in three days only!
Have a look below at the updated program and information on how to join!
We are very much looking forward to celebrating with you this very special day!!!
#MadeToShine #FaitPourBriller #ConLuzPropria #MeuOlharReluz #GlobalAlbinism

We are only three days from Saturday June 13th: International Albinism Awareness Day. Here's what you should know.
1. The International Albinism Awareness Day Online Celebration - A concert featuring musicians with albinism will take place at 10AM EDT*
Watch it live at: International Albinism Awareness Day
2. Happy Hour - A town hall hangout housing a maximum participants of 150 will happen at 11:30AM EDT*
Join the English Happy Hour at:
https://bluejeans.com/403411354
Join the French Happy Hour at:
https://bluejeans.com/929407677
Join the Spanish Happy Hour at:
https://bluejeans.com/777668934
Join the Portuguese Happy Hour at:
https://bluejeans.com/145037867

#MadeToShine #FaitPourBriller #ConLuzPropria #MeuOlharReluz

29/05/2020

The Global Albinism Alliance - Pilot is proud co-organizer of the International Albinism Awareness Day Online Celebration and Happy Hour.
We encourage you to participate! Find out how in the post below.

YOU CAN PARTICIPATE!
In the International Albinism Awareness Day Online Celebration
HERE IS HOW:
Make a video selfie that you are happy for us to publish online
Length: 0.15 (fifteen seconds)

Your Message: Send us your video message to the world on the occasion of international albinism awareness day! Tell us how you shine. Frontline workers with albinism can also share how they are doing at this time of pandemic.

Who: Can be individuals or on behalf of an albinism group.
Introduction: Say your name(s) and if applicable, the organization you are representing.

Languages: English, French, Spanish or Portuguese

Camera: We strongly recommend that you use a phone or mobile device to shoot your video. Can you shoot in HD (16:9)? That would be best!

Orientation of Screen: horizontally, never vertically, and position yourself in the center of the frame. Your camera’s lens should be level with your eyes or slightly higher (but never lower).

Lighting: Ideally you should have light sources off to the left and right of the camera. They should be higher than the camera lens if possible. A simple solution is two floor lamps placed a few feet off to either side of the camera. Make sure they are spread far enough apart that you don’t need to squint to look at the camera.

Speak loud and clear: Ideally use headphones with built-in if you have them. Otherwise, speak loud and clear.

Test your set-up! Do a trial run ahead of time! Rehearsal always makes us feel better.

Name your recording with your name_your country. If you cannot do so, just send it like it is as long as you introduced yourself clearly in the video so we can identify you.
SUBMIT as follows

SUBMIT BY uploading to this link: https://osf.app.box.com/f/d9df14e0f6be44d497eec083138572d3

DEADLINE: Please send your video by midnight your time on June 5

By submitting you grant all organizers of the event the permission to share your video across social media in celebration of albinism day and albinism advocacy.

Note: Group videos are welcome but in doing them, Please Respect Covid-19 rules in your community.

Thank you and we truly look forward to showcasing you and an amazing event.

04/05/2020

Home | jpkf

This is a shared announcement.
Please do not contact us for further information but click on the link below.
--------------------------------
𝙏𝙝𝙚 𝙅𝙤𝙨𝙚𝙥𝙝 𝙋. 𝙆𝙚𝙣𝙣𝙚𝙙𝙮, 𝙅𝙧. 𝙁𝙤𝙪𝙣𝙙𝙖𝙩𝙞𝙤𝙣 𝙞𝙨 𝙥𝙡𝙚𝙖𝙨𝙚𝙙 𝙩𝙤 𝙖𝙣𝙣𝙤𝙪𝙣𝙘𝙚 𝙩𝙝𝙚 𝙣𝙚𝙭𝙩 𝙧𝙤𝙪𝙣𝙙 𝙤𝙛 𝙞𝙩𝙨 𝙄𝙣𝙩𝙚𝙧𝙣𝙖𝙩𝙞𝙤𝙣𝙖𝙡 𝙋𝙪𝙗𝙡𝙞𝙘 𝙋𝙤𝙡𝙞𝙘𝙮 𝙁𝙚𝙡𝙡𝙤𝙬𝙨𝙝𝙞𝙥 𝙋𝙧𝙤𝙜𝙧𝙖𝙢 𝙞𝙣 𝙄𝙣𝙘𝙡𝙪𝙨𝙞𝙫𝙚 𝙀𝙙𝙪𝙘𝙖𝙩𝙞𝙤𝙣 𝙞𝙣 𝙘𝙤𝙤𝙥𝙚𝙧𝙖𝙩𝙞𝙤𝙣 𝙬𝙞𝙩𝙝 𝙐𝙉𝙄𝘾𝙀𝙁.
We are seeking a Fellow for one of the following possible placements:

1. UNICEF Country Office, Montevideo, 𝗨𝗿𝘂𝗴𝘂𝗮𝘆 (Fluency in English and Spanish required)

2. UNICEF Country Office, Yaounde, 𝗖𝗮𝗺𝗲𝗿𝗼𝗼𝗻, (Fluency in English and French required)

3. UNICEF Regional Office, 𝗠𝗶𝗱𝗱𝗹𝗲 𝗘𝗮𝘀𝘁 and 𝗡𝗼𝗿𝘁𝗵 𝗔𝗳𝗿𝗶𝗰𝗮 (MENA), Amman, Jordan (Fluency in English required; proficiency in Arabic an asset)

The fellowship will be awarded in late 2020 and will begin in or before the first quarter of the 2021 calendar year.

𝗧𝗵𝗲 𝗮𝗽𝗽𝗹𝗶𝗰𝗮𝘁𝗶𝗼𝗻 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝗠𝗮𝘆 𝟯𝟭, 𝟮𝟬𝟮𝟬 𝗯𝘆 𝟱:𝟬𝟬 𝗣.𝗠. 𝗘𝗦𝗧

Further information: https://www.jpkf.org/

Joseph P. Kennedy Jr., the oldest child of Joseph and Rose Kennedy, was born on July 25, 1915. He attended the Choate School in Connecticut and the London School of Economics prior to entering Harvard, from which he graduated cm laude in 1938. He went on to Harvard Law School but left before his fi...

14/04/2020

The Global Albinism Alliance - Pilot Team is joining the international albinism community in honoring the memory of the late Josephat Torner.
The GAA Pilot Team would like to express its genuine condolences and support to Josephat's relatives, friends and work partners.
Josephat was an outstanding advocate of the albinism cause. He was an example to follow and will be forever missed.

It is with our deepest sorrow that we inform you of the passing of our Josephat. Yesterday evening at around 7pm Tanzania time, he was hit by a vehicle while crossing a busy street in Mwanza. Our team is in shock and disbelief.

You cannot imagine how many people he has inspired with his words, laughter, brave acts, kindness, and deep sense of empathy. He was a passionate advocate of human rights dedicating his whole life to the marginalized. His tireless efforts to defend the rights of people with albinism and his charismatic leadership have encouraged us so much to stand up to get our message across.

Josephat has also taught us to Forgive others - one of the difficult things to do. He often said : Without forgiving what they have done to you, you will never make progress - we will cherish this wisdom in continuing our work.

The albinism community has lost a great leader, a brother, a friend, and someone who has changed many of our lives. But we will carry on with our work to achieve an all-inclusive society : Josephat's dream - a dream he has fought for so bravely.

Josephat, we wish you never would have left us this early.
It will never be the same here without you.
May you rest in peace.

====

Gisterenavond bereikte ons het verdrietige bericht dat Josephat is omgekomen bij een verkeersongeval. We zijn nog steeds in shock. Josephat, onze grote inspiratiebron, onze vriend, is er plotseling niet meer.

Hij was een inspiratiebron voor velen, vooral voor kinderen en jongeren met albinisme. Ook mensenrechtenactivisten in andere Afrikaanse landen werden door hem geïnspireerd.

Hij was als een spin in het web. Hij wist precies wat er overal speelde en werd steeds invloedrijker in eigen land. Hij zette zijn leven op het spel voor waar hij in geloofde: het creëren van een gelijkwaardige wereld voor mensen met albinisme.

Lieve Josephat, bedankt voor alles. Bedankt voor wie je was. Bedankt voor het aanraken van onze levens.

De Josephat Torner Foundation Europe zal blijven bestaan. Het is een eer om jouw naam te mogen dragen en verschil te mogen maken in deze wereld.

Rust zacht vriend.

(photo : Marleen Swaans)

02/03/2020

𝗔 𝘄𝗲𝗲𝗸 𝗮𝗴𝗼, 𝘁𝗵𝗲 𝗹𝗲𝗮𝗱𝗲𝗿𝘀 𝗼𝗳 𝘁𝗵𝗲 𝗣𝗶𝗹𝗼𝘁 𝗚𝗹𝗼𝗯𝗮𝗹 𝗔𝗹𝗯𝗶𝗻𝗶𝘀𝗺 𝗔𝗹𝗹𝗶𝗮𝗻𝗰𝗲 𝗵𝗲𝗹𝗱 𝘁𝗵𝗲𝗶𝗿 𝗳𝗶𝗿𝘀𝘁 𝗾𝘂𝗮𝗿𝘁𝗲𝗿𝗹𝘆 𝗚𝗲𝗻𝗲𝗿𝗮𝗹 𝗢𝗿𝗱𝗶𝗻𝗮𝗿𝘆 𝗠𝗲𝗲𝘁𝗶𝗻𝗴.
With participants located in 7 different time zones, the meeting had to be held online at a time when some were just waking up and others were staying up late at night! The busy agenda included, among others, some discussions on the Pilot road map, on fundraising and on the upcoming global consultation on the future alliance.
#GlobalAlbinism

18/02/2020

𝗔 𝘃𝗮𝗿𝗶𝗲𝘁𝘆 𝗼𝗳 𝗰𝘂𝗹𝘁𝘂𝗿𝗲𝘀, 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀 𝗮𝗻𝗱 𝗲𝘁𝗵𝗻𝗶𝗰𝗶𝘁𝗶𝗲𝘀, 𝗯𝘂𝘁 𝗼𝗻𝗲 𝗰𝗼𝗺𝗺𝗼𝗻 𝗰𝗮𝘂𝘀𝗲 𝘁𝗵𝗮𝘁 𝘂𝗻𝗶𝘁𝗲𝘀 𝘂𝘀 𝗮𝗹𝗹: 𝗔𝗹𝗯𝗶𝗻𝗶𝘀𝗺!

Group photo from the Exploratory Meeting on the creation of a Global Albinism Alliance. Paris, January 27, 2020

#GlobalAlbinism

with Albinism Fellowship of Australia, Fiji Albinism Project, 月亮孩子之家, 日本アルビニズムネットワーク, Jeevan Trust, National Disabled Albino NEPAL, Albinizm Derneği, Türkiye, Albinism Society of KENYA, Albinism Society of South Africa, Association of Persons With Albinism in Malawi, Thando Hopa, Association Nationale de l'Albinisme au Sénégal - ANAS, Genespoir : Association Française des Albinismes, Noah Albinismus, Albinit, ALBA, Asociación para la ayuda a personas con albinismo, Albinism Europe, National Organization for Albinism and Hypopigmentation - NOAH, HPS Network, Corporación Albinos Chile, Simplemente Amigos - Fundación Nacional de Albinismo, Albinos do meu Brasil e do mundo, Albinismo em foco, Fundación Albinos por Colombia, Under The Same Sun, Standing Voice, Open Society Foundations, Hon. Isaac Mwaura - Senator for Persons With Disabilities. UN Albinism - Ikponwosa Ero, Personal Page
Photo: Antoine Bonfils

08/02/2020

January 26, 2020 - Paris, France
"𝗔𝗹𝗹𝗶𝗲𝗱 𝗳𝗼𝗿 𝗢𝘂𝗿 𝗖𝗼𝗺𝗺𝗼𝗻 𝗖𝗮𝘂𝘀𝗲"

When all 27 delegates coming from every corner of the globe raised their hands in a historic movement of fraternity and solidarity to approve unanimously the creation of a Global Alliance for Albinism.

#GlobalAlbinism

Genespoir : Association Française des Albinismes, Albinit, ALBA, Asociación para la ayuda a personas con albinismo, Noah Albinismus, Albinism Europe, Albinizm Derneği, Türkiye, Jeevan Trust, National Disabled Albino NEPAL, National Organization for Albinism and Hypopigmentation - NOAH, HPS Network, Simplemente Amigos - Fundación Nacional de Albinismo, Corporación Albinos Chile, Fundación Albinos por Colombia, Albinos do meu Brasil e do mundo, Albinism Fellowship of Australia, Fiji Albinism Project, Albinism Society of KENYA, Albinism Society of South Africa, Association Nationale de l'Albinisme au Sénégal - ANAS, 月亮孩子之家, 日本アルビニズムネットワーク, Standing Voice, Under The Same Sun, UN Albinism - Ikponwosa Ero, Personal Page

02/02/2020

People with Albinism Form First Ever Global Alliance

Big thanks to India Annamanthadoo (Externship Student, Disability Rights Division at Human Rights Watch) for this great report!
India was a member of the secretariat during our Paris exploratory meeting 26-28 January, 2020.

This week, I witnessed a historic moment in human rights advocacy and empowerment: people with albinism from around the world unanimously voted to form a global alliance on albinism.

30/01/2020

𝗧𝗵𝗲 𝗻𝗲𝘄𝗹𝘆 𝗳𝗼𝗿𝗺𝗲𝗱 𝗚𝗹𝗼𝗯𝗮𝗹 𝗔𝗹𝗯𝗶𝗻𝗶𝘀𝗺 𝗔𝗹𝗹𝗶𝗮𝗻𝗰𝗲 𝗵𝗮𝘀 𝗷𝘂𝘀𝘁 𝘀𝘁𝗮𝗿𝘁𝗲𝗱 𝗶𝘁𝘀 𝗼𝗽𝗲𝗿𝗮𝘁𝗶𝗼𝗻!

Paris, January 28, 2020
27 delegates coming from 7 different continents elected a Technical Team and a Secretariat to serve the Alliance during its 𝗼𝗻𝗲-𝘆𝗲𝗮𝗿 𝗽𝗶𝗹𝗼𝘁 𝗽𝗵𝗮𝘀𝗲.
The Technical Team, working as the board, will give oversight to the work of the Secretariat.
The Secretariat will be in charge of executing the objectives of the Pilot while the UN Independent Expert on Albinism, UN Albinism - Ikponwosa Ero, Personal Page will serve as a Technical Adviser providing overall support to the Pilot.

𝗘𝗹𝗲𝗰𝘁𝗲𝗱 𝗧𝗲𝗰𝗵𝗻𝗶𝗰𝗮𝗹 𝗧𝗲𝗮𝗺
- Carolin Schroeder (Germany)
- Isaac Mwaura (Kenya)
- Michael McGowan (USA)
- Shari Parker (Australia)
𝗘𝗹𝗲𝗰𝘁𝗲𝗱 𝗦𝗲𝗰𝗿𝗲𝘁𝗮𝗿𝗶𝗮𝘁
- Antoine Gliksohn (France)
- Elizabeth Beales (Australia)
- Julio Garcia (Argentina)

This election result represents a cross section of continents, nationalities and genders.
This truly global team looks forward to serving in this initial 12 month pilot stage, to ensure the strength, effectiveness, and future of the Global Albinism Alliance.

Many thanks to Open Society Foundations and Under The Same Sun for making this happen.

Photo by Antoine Bonfils and Claire Nicol
#GlobalAlbinism