Small change, big results.....

Dear Friends and supporters,

It's that time of year when charitable requests arrive with the frequency of Christmas and holiday cards.  Organizations like Asante Mariamu rely on small donors to run our programs.  $50 buys a Rafiki Pack full of sun protection gear for a student; $10 provides a hat and sunglasses; and $300 can educate a child for a year.  Recurring donors help us create sustainable programs with confidence.  If you can spare a donation at the end of 2013 - you can claim it on your taxes and help us reach more kids with albinism in East Africa.

It's easy to help - just follow the link to send a secure payment via PayPal.  Many thanks, and a very Happy New Year to you and yours.....

Click here to support our programs.

Purchase “Asante Angels” as a gift ... and help kids with albinism, too!

"Asante Angels" are a perfect holiday ornament, window hanging, or package decoration.  At $10 each, you can order several and have them on hand to thank teachers, neighbors, co-workers and friends.

  

The angels are handcrafted in Kenya and Uganda through a fair trade cooperative, and are made from banana fibers and sisal (5" tall).  Each includes a certificate confirming that your purchase benefits children in East Africa by covering the cost of sun-protective gear. 

If you are in the DC region, you can pick up your angels at the Washington Lee High School Holiday Shop on December 7th.  Angels can be also be delivered via USPS for an additional $2.50.  

Orders must be completed by November 29th.  Make payments via the Asante Mariamu website via PayPal or in person.   

Payment information: Make checks out to Asante Mariamu.  For PayPal, click "Donate" under "One Time Donation," reference Asante Angel in the "special comments to seller" section, and provide a shipping address if necessary. Payments should be $10 per angel, or $12.50 per angel with shipping.  

One Person Can Make a Huge Difference: an Eagle Scout helps Asante Mariamu

Over a year ago, Asante Mariamu received an email from Khai Fletcher, a teenager in Maryland.  Khai was a Boy Scout for years, and wanted to become an Eagle Scout.  He needed to plan and develop a service project, and he chose helping people with albinism in Tanzania.

It takes a lot of work to become an Eagle Scout.  Khai researched albinism, and learned how it impacts people in East Africa.  Over the next year, he planned, developed and participated in several awareness activities.  Khai spoke at Scout meetings, at his church and in his community; he enlisted friends and family to help; and hosted a Sun Drive to gather donations.

Through his efforts, Khai raised a lot of awareness about albinism and the threat of skin cancer.  He collected clothing, brimmed hats and many pairs of sunglasses.  He also held a car wash to raise money to buy monoculars for students with albinism -- and raised over $300!

We love working with young people, and Khai is a good example of how much one person can do to help.  Thanks so much to Khai's family, his troop and his community for supporting his hard work.  Asante sana, Khai!

Teaching just one person that albinism isn't a curse is worth it.

Georgia Gray, a student at Oxford University contacted Asante Mariamu last January, offering to help our organization.  We were fortunate that this compassionate and energetic young woman volunteered to travel to Tanzania with Doug this summer.  In the second part of her story, Georgia describes one of the success stories we encountered in Tanzania.  Asante Mariamu will work closely with Sister Maria Helena to expand her work and replicate it in other areas.

 

Sister Maria Helena is a nurse who lived in Wisconsin for over a decade when she heard the reports of the killings in Tanzania.  Originally from Tanzania herself, Sister Helena knew that her calling was to return to her home country in order to help children with albinism in any way she could.  She bought her own house and set up a small sanctuary, and children with albinism were brought to her for protection.   She provided these children with an education, food and a warm place to sleep. She gave them the safety that they often so desperately lacked within their own small rural villages.  

But more than that, these children were so very happy.  

For the small time we were there, we had met over a hundred albino children all in differing physical and mental states.  Often these children were shy and nervous in the presence of strangers.  Their skin, even at schools we visited, would frequently be already pock-marked with pre-melanomas and various skin tags across their face and arms.  One girl, just 11 years old, had a scar so deep on her face that at it’s height of infection her cheek bones must have been visible.  The scar wasn’t from some hideous attack, but merely from the sun.  Yet the children at Sister Helena’s, although young and none over 7, had the most pristine smooth skin imaginable. It was our last stop on our trip and we were all in awe at the remarkable condition of their skin. These children were being well cared for, especially with respect to the sun. 

Our journey was very difficult in this respect.  Although we met many people who dedicated their time and resources to keeping people with albinism safe and protected from attacks and the omnipresent threat of the sun, there were far too few resources to go around.  We provided hats, sunglasses and sun cream wherever we went, and indeed, there was no feeling quite as touching as seeing a class full of children proudly donning their orange sun hats and sunglasses. But by far the most valuable thing provided was education.  

Doug’s talks to children and parents alike will hopefully encourage the use of the hats and sunglasses, but will also serve to change the behaviour of the community itself.  If only one person at each place absorbed the facts about albinism, and could teach their neighbours or family members that it is not a curse, then the trip was worth every effort made in it. 

I’m writing my dissertation at the moment, and all I know now is how much I cannot begin to understand.  The problems in Tanzania are deep-rooted and incredibly powerful and will not be easy to change.  Whilst people have no alternatives to traditional beliefs you cannot expect behaviour to change markedly.  But that is what makes Asante Mariamu’s mission so important. It not only provides the tools to protect those individuals but arms people with the knowledge to change the way they think.  It will not be an easy ideology to change but I truly believe it can be done.  With Asante Mariamu’s work, not just individually but also by facilitating the amazing people we met in Tanzania, the problem can hopefully, finally, be solved.

We hope that Georgia will continue to use her considerable passion and talent to make a difference in this world, and we are grateful for her contributions.  Asante sana, Georgia – and what are you doing next summer? 

How do you give up one child to save two?

Georgia Gray, a student at Oxford University contacted Asante Mariamu last January, offering to help our organization.  We were fortunate that this compassionate and energetic young woman volunteered to travel to Tanzania with Doug this summer.  Here is her story.

About a month ago I travelled to Tanzania, under the guise of gathering information for my final year university dissertation.  I’d read all the papers recommended by my supervisors, scoured the library and emptied online journals of any relevant papers.   Ask me the difference between ocular and oculocutaneous albinism and I’d be able to reel off the facts in the order they were discovered. Tell me to draw a genetic diagram explaining albinism inheritance and I could do it in a heartbeat.  Colour coded.  Tell me that the trip I was set to embark on made this information completely redundant and I’d probably have a hard time believing you.

We’ve all read the stories, and heard the news reports detailing the absolutely horrific crimes going on in Tanzania today.  And as a fledgling student, eager and willing to solve the problems of the world through my one paper, I couldn’t be more excited to tackle the problem head on.  Surely, I thought, this wasn’t that complicated. 

I got my first taste of reality no more than twelve hours into the trip.  Speaking to Reverend Bartholomew of Bishop Mpango School, I asked him about any stories of attacks within the region.  Had any albinos he knew been attacked?  He looked at me like I was from another planet, before affirming the question, that yes of course he knew of attacks.  Yes the children in his school had been attacked.  Yes the people we were to meet the next day had been threatened countless times, were scared to leave their own home, had hidden themselves or their family for many years.  ‘Look at this woman,’ he said to us just the morning after.  ‘This woman had one of her children taken and murdered, with the attackers threatening the life of her two non-albino children in exchange for her albino child.’  She had had to make a decision so disgustingly horrifying, so completely against every primal extinct we have; in order to save her other two children. 

I couldn’t even begin to comprehend how this woman was still here, still in fine mental health, with another child breastfeeding quietly at her chest.  But I was soon to learn that such stories were commonplace in these areas, that everyone, be it mother, father, brother, sister or neighbour had another horrific tale to divulge.  It was routine, and for every mother who had had her child taken, there was a father who could not even mourn for his deceased child because of the all too common act of grave-robbing albino graves.  

The people we met out there, whether they were church leaders, or fellow non-profit organisations were all so startlingly brave in the face of such limited community support.  They were going into extremely rural areas and combating an ingrained social issue with extremely limited financial or physical support.  It was often a thankless task: the government had little involvement, and the people we were helping were at direct threat from the community they lived within.  Thankfully, we worked with people on the ground who saw it as their utmost duty to help the most vulnerable members of their society.

Georgia has more to say about her trip, and the bravery she encountered.  Her next post will introduce one of our heroes, Sister Maria Helena.

Doug gets his goat(s)

The Asante Mariamu team traveled into the Serengeti to meet rural villagers with albinism‬. Here is Doug with Ngongo (the person with the stick) and one of his 13 wives (far left). Ngongo has 3 grandchildren with albinism, and the goats were given to thank Doug for holding the first Albinism Awareness Day in the region. The grandchildren were in school with Sister Helena. It was one of Doug's favorite days. 

NBA star Stephen Curry visits Tanzania, meets Kabanga Center's coordinator

As part of the Nothing But Nets campaign, NBA basketball player Stephen Curry recently visited Tanzania to distribute anti-malaria bed nets.  While in the Kigoma region, he met Mr. Samuel Stephen, who is in charge of the Kabanga Protectorate Center, home to almost 70 children with albinism.  Mr. Stephen explained the dire situation faced by the albino children housed at Kabanga, and also the impact the lack of adequate drinking water on their health and education.

Asante Mariamu witnessed the effect of the lack of clean drinking water last summer.  In addition to the dangers of dehydration, the overcrowded facility lacked adequate washing facilities and working plumbing.  The lack of clean water created serious health risks, but also diminished the basic human dignity of the children and families living at the center.

Mr. Stephen asked the NBA star for help in raising the $25,000 needed to solve this problem - which is all it would take to create a new sanitation system, including a new well.  It seems like such a small amount, but for the close to 200 disabled children living there, it could make a world of difference.  I am keeping my fingers crossed that Stephen Curry will find a way to help.

A Student Leaves Kabanga Protectorate Center to Excel in Secondary School

I first met Asrafil in March of 2012 on my first trip to Kabanga.  Gangly with a friendly smile, we made an easy connection.  At first, I thought his name was Rafiki, which means "friend" in Swahili.  I am not sure if it was a miscommunication or simply an expression of his nature.

Asrafil told me that he was 18 and just finishing up primary school, and that he wanted to be an engineer or architect someday.  I asked him if he was going to go to secondary school, and he said he had no idea.  He wasn't sure if his grades would be good enough to get in, and he had no idea how he would pay for it anyway.  He had been living at the Kabanga Protectorate Center for a couple of years, and was ready to move on, but had no plans.

When our team arrived in July, he was still there, and still friendly.  He helped us paint blackboards, hang artwork, and work with the little kids.  As with so many of the other kids at Kabanga, I didn't know how to say goodbye to him.  I've thought about him over the last year, and was hoping to get an update on how he was doing.

I am so happy to report that he is one of the highest performing students at Bishop Mpango Secondary School, and was just elected Chairperson of the newly-formed Kibondo Tanzania Albino Society! Asrafil was brought back to Kibondo because his family was there, and he found a spot at Bishop Mpango.  His studies are going very well, and he is a leader in his community, and an excellent role model.

One of our goals for the AM 2013 trip was to start new TAS chapters in rural outposts, and the people with albinism in Kibondo elected Asrafil to represent them.  Our team provided the newest TAS Chairperson with a cell phone and a resource book full of educational information in English and Swahili, and organized a planning meeting to outline some ideas for the next year.

Asrafil is doing an amazing job, and we hope he continues to be an inspiration to those around him.  Now, in a shameless plea for help, we are looking for people to help us sponsor his education through to completion.  We don't want Asrafil and his family to stress about whether or not they can provide tuition money, or if the school is going to just float him.  We want him to know that as long as he is doing well in school, we will provide for his tuition and fees. Tuition and fees at Bishop Mpango total $500 a year, which is less that $10 a week.  If you would like to help us provide for Asrafil's education, please visit our website, or email me at Susan@Asante-Mariamu.org.  Asante sana!

Albinism awareness event in Tanzania: both a hidden child and a witch doctor attend

News from Doug has been sporadic, but our partners on the ground have been filling us in on the trip so far.  One of the most meaningful things to come out of our first awareness event in Kibondo was that a father who has been hiding his son since his birth finally felt safe enough to bring him out in public.  The boy is 3 years old, and has never been into the village.  The dad learned about albinism, and how to care for his son; and the little boy received his first hat, sunscreen and pair of sunglassses.

Doug met another father who has been hiding is 30 year-old daughter for 6 years - from when the killings began.  He does not think it is safe to bring his daughter out in public yet, but was encouraged by the event.

It was unsettling to learn afterwards that a witch doctor was in attendance - and had been invited.  However, one of the realities we accept is that witch doctors are integral to Tanzanian society, and we are better off educating them than fearing or shunning them.  When I asked if the witch doctor's opinion about albinism had changed, I was told that it had, and that he feels differently now.  Apparently, he even suggested that we invite all of the witch doctors in the region to the event in 2014.

I'm not sure about going that far, but I think we are taking steps in the right direction.

Our event was attended by almost 600 people, including numerous local dignitaries and journalists. The ability to spread awareness about albinism to so many people far surpassed our expectations, and we are indebted to Reverend Bartholomew Segu for organizing the event.   However, the most significant impact of our time in Kibondo will always be that a 3 year old child went to his village for the first time.

An Abundance of Supplies and Karma

I thought I would have some time to unwind and relax after sending Doug off to Tanzania, but nothing could be further than the truth.  It's been a bit of a crazy week, but I am grateful for the abundance of supplies and opportunities:

We packed and repacked for days; and in the end, Doug and our team took 350 pairs of sunglasses, 280 low-vision devices, 280 Asante-orange hats, thousands of posters and pamphlets, 4 resource books to help new albinism advocacy groups — and lots of good wishes.

Two days later, we had a fantastic last minute opportunity to ship supplies to Kenya with friends who are moving there for a new job.  Thanks to Michelle and Chris, we were able to send 500 pairs of sunglasses, 280 long-sleeve shirts; and hundreds of low-vision devices, including 312 hand-held magnifiers, 20 monoculars, 160 cylinder magnifiers, 43 large magnifiers and 23 stand magnifiers.  I can't imagine how many single suitcases it would have taken us to get all of that material to East Africa!

Also, we were able to meet Tara Sullivan, author of Golden Boy - a new coming-of-age novel about a 13 year old boy with albinism in Tanzania.  Tara is appearing at One More Page Books in Arlington on Tuesday, and we were lucky to get to pepper her with questions and get a preview of her presentation.  Please come if you are able, or order her book from OMP.  It's a great story.

To end the week, I had a meeting with Arlington Academy of Hope, an NGO that works in Uganda.  We were discussing the huge success of our Rafiki Pack program, and ways to expand it. They invited us to travel with them to Uganda to develop an albinism awareness program there!

And finally, bringing it all full circle, I received an email from Mariamu.  She is doing well, and is so excited that our work is continuing in her name.  Telling her about what Doug is working on this week in Tanzania, and how we are expanding into Kenya and Uganda was a powerful testament to her inspiration.  All in all, it's been a good week.  Stay tuned for updates from Doug, and thanks for the support.

The beginning of an adventure...

I have been trying to write the next trip update, but have been stymied on how to start.  Well, it just hit me.

I've been fortunate to talk to Doug several times via FaceTime, and he's had some unforgettable experiences already.  From having to convince the Customs Agent in Dar es Salaam that the Minister of Health did not need to personally certify that the 300 pairs of sunglasses he brought were safe to use as medical devices -- to being woken up at 3am by an elephant eating palm fruit outside of his tent -- it's already been an adventure.

Last night, he met with the leaders of the Tanzanian Albino Society and shared our new resource book for people with albinism, and agreed on ways to move forward in partnership.  He'll be traveling with others from TAS in the next two weeks in three different rural areas, leading awareness and advocacy events, and distributing all of the donated supplies to hundred of people with albinism.

I just received an email from our friend Reverend Bartholomew, and Doug and the team has arrived safely in Kibondo, and tomorrow is the first official event.  We are very excited and grateful for all the support we are receiving on the ground from our partners in Tanzania, and from our friends at home.  Asante sana!

Tanzania 2.0: Bittersweet

Doug left for Tanzania last night, full of plans and good intentions.  He is still in the air – somewhere over Africa. I envy the anticipation and the imminence of his experience. It is a bittersweet thing, to send him off.

Every plan is still possible. He hasn’t run into any roadblocks – cultural or literal.  He hasn’t missed a chance or made a misstep. Not that he will, mind you; it’s just the perfection of possibility.

Also, he hasn’t had his heart broken yet.  He hasn’t had to confront how dire the situation is for African children with albinism.  He hasn’t had to walk away from a child that needs so much more than a hat and sunglasses. 

I also envy his “first time in Africa” experience.  Friends of mine who work in Africa will roll their eyes at how this sounds, but there really is nothing – nowhere – like Africa.  I know he will love it, and will soak up every part of it without reservation or judgment.

He is carrying part of me with him – literally.  He took a small portion of my mother’s ashes with him to sprinkle somewhere in Tanzania. Partly because she was the first person to support Asante Mariamu, and partly because she would have loved to have gone herself.  In her place is another early Asante Mariamu supporter and volunteer named Sharon Turtoro, who was my mother’s best friend.  Sharon nursed my mom all last summer, and was there when I couldn’t be.  I am glad she is with Doug now.

I will provide updates as I get them, and more details in the days to come.  Our deepest thanks to everyone who has donated time, money, clothing, sunscreen and talent to make this journey possible.

Love,

Susan.

A Remarkable Story: Habo, Golden Boy

Yesterday was a special day for people with albinism in Tanzania, and it is likely that none of them know it.  No one in Tanzania has heard of Habo - but hopefully, that will soon change.  A new book debuted that sheds light on the myths that surround albinos in Tanzania, and the danger they live with every day.  Tara Sullivan is a first-time author, and with "Golden Boy," she's drawn a perceptive portrait of a young boy with albinism who struggles against poverty, prejudice and murderous intent to find his place in the world.  This book could bring a new awareness to the plight of people with albinism in Tanzania.

Albinos in Tanzania aren't just shunned and discriminated against - they are hunted for their body parts to fuel a black market.  Witch doctors promote the myth that the hair, skin and limbs of people with albinism can be made into potions that bring wealth or luck.  As a result, over one hundred people with albinism have been murdered or mutilated in the last five years.  Asante Mariamu Foundation works to raise awareness about this issue, and help people with albinism in Tanzania

In "Golden Boy," Habo lives in relative peace with his mother, sister and brother in a rural Tanzanian village, barely surviving as subsistence farmers.  When his family is forced to leave the security of his village, Habo is confronted with the ugly reality that face people with albinism all throughout Tanzania.  They are treated as curses, and viewed as a "walking paycheck" by many.  Habo realizes that he must leave the comparative security of his family to seek safety in a large city.  What happens is a coming-of-age story that weaves accepting albinism with growing up against the backdrop of gruesome myths that surround albinism in Tanzania.

The story is compelling because of the subject matter, but it is memorable because of Habo.  Like a lot of teens, he is a study in contrasts: proud, confused, afraid, brave, stubborn and perserverant - and it is gratifying to watch him take the journey into adulthood.  People with albinism in Tanzania deserve the same chance to seek peace and fulfillment, and this book might be a step in that direction by raising awareness.
Check out this review in the Wall Street Journal: http://tinyurl.com/ouksutf