Nobody should die prematurely from diabetes!

On the last two weeks I had really sad news about two women who died because of diabetes. It´s not that uncommon and it always hit me. One was someone close to a friend family, here in São Paulo, a women around 35, who had a successful life in her personal and professional life. What people told me (people are afraid to tell you bad news when they know you have diabetes) that she got a H1N1 influenza for the second time and didn´t resist to it. The other person was a young girl I met in one of my trips, very kind and intelligent. She had a kidney failure and didn´t resist.

One had access to medication and education. I can´t tell that the same happened to the other. But what it makes me think is that handle diabetes is such a difficult task that we need to emphasize the importance of the multidisciplinary treatment, with the idea that no one should face this disease alone or “in the dark”.

This is not new: diabetes is a chronic disease and until this day it has no cure. This is a huge burden people with diabetes have to live with, added to this the stress of controlling 24/7 the glycemia, having to deal with prejudice, fear and stigma, explaining what is happening to you to your family and friends (and sometimes to society) and take care of our body (after all, diabetes is not the only thing you need to care about your health) and mind.

Michelangelo: "I just had to take off what wasn´t Davi"
Michelangelo: “I just had to take off what wasn´t Davi”

When difficult times comes on your professional or personal life it is hard to keep the balance and all the balls juggling in the air. And  I think that fits here some ideas (the same that I need to listen sometimes) that can improve any type of relationship, by the way. It´s not a recipe, but maybe it can give food for thought:

1) Family and Friends: please, listen without any playing the judge or the devil´s advocate. Don´t minimize what someone is feeling by trying to rationalize an emotion.

2)  Healthcare professionals: make treatment decisions a shared goal, that I also have the autonomy to choose the path I want to follow.

3) You there with diabetes:

  • Clarify to yourself why you are feeling what your feeling: Clarity: invest on your self-knowledge, continuously, and in every sense of your being. This will help you understand more of your body (eg.: every time I get to stressed my glycemia tend to raise/ drop) and mind (to help you cope with this condition (and many others that life can bring unexpectedly).
  • You are not alone: don´t be afraid or ashamed to ask for help and search for professional health support, including support groups, sometimes those beloved one around you are not ready to listen, understand and create the empathy you need on a specific moment. Not because they don´t want to, they really love you, but sometimes they just don´t have the tools, we are all humans: liable to defects and limitations;
  • Fight for your rights: of access to medicine, care and education.
  • Don´t be afraid of being wrong: sometimes you’re up, sometimes you’re down. Don´t be too hard on yourself. Learn with your mistakes.

Write this post is somehow a chance to take the pain I feel when those kind of news hit me. Wish and hope that one day no one will die prematurely from diabetes.

Peace.

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Addressing T1D at Public Schools, Public Libraries and NGOs

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In 2010 I was gently invited to participate on a beautiful project to create a playful educative book on type 1 diabetes. The Fundação DPaschoal is the social arm of a 63 years old  brazilian organization, DPaschoal.

fundação educarThe Fundação has some projects based on te following dreams:

Trote Cidadania: Through a social technology, develop young able to transform themselves, their schools and communities. Turning violence culture on college into citizenship actions.

“Leia Comigo” (“Read with me”):  That every child in Brazil has the pleasure of reading and his own book.

And this reality comes true, youngsters are protagonists on their own changes at Academia Educar (Education Academy) working society competence and values. Until 2010, more than 31 million books were distributed in all states of Brazil. It´s important to point that Brazil has around 13 million people with all types of diabetes, the same number, 13 million people, don´t how to read or write ( 8.7% of the total population aged 15 years or more) at all.

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 DPaschoal supports a government project called “Todos pela Educação” (“All for education”) and distributes books on public schools, libraries and NGOs. Those book are designed by a committed team of excellent experts on education and are made to be read in groups and generate debates about many important topics/values/moral.

The “Todos Pela Educação” goals are:

 1. EVERY CITIZEN, FROM 4 TO 17 YEARS OLD, IN SCHOOL
2. EVERY CHILD BEING FULLY ALPHABETIZED BY THE AGE OF 8
3. ALL STUDENT LEARNING ARE SUITABLE FOR EACH YEAR
4. ALL  CITIZEN AT THE AGE OF 19 HAVING COMPLETED SCHOOL
5. EXPANDED INVESTMENT IN EDUCATION AND BEST MANAGEMENT PRACTICES

I´m super glad to be part of this project that is so holistic: touching themes such as education in my country, diabetes education, stigma, prejudice at school and myths. A big thank you for my brother, Rafael Labate, that worked actively suggesting type one diabetes as a topic to be addressed by the institution and Fundação DPaschoa  team for allowing me to tell my history, to hear about your history and contribute with my thoughts and networking.

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 So this year, the book,  was released and soon will be available to our population

. It is sponsored by DPASCHOAL, Lei de Incentivo à Cultura and MANN FILTER. If you are interested in sponsoring the project, please contact Marina Carvalho at: marina.carvalho@educardpaschoal.org.br

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Who looks outside, dreams. Who looks inside, awakens!!!

II IDF Young Leaders in Diabetes Programme

Last November I had the honor to be part of the II Young Leaders in Diabetes Programme that took place in Melbourne, Australia, with more than 130 people from all over the world. Each one making projects that are changing the would you live.

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It´s a multicultural environment that puts together people with the same diagnosis, that pass through similar challenges, but at the end of the day our differences are the part that makes my eyes shine bright.

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I think that every journey we decide to do on the outside announces a big journey on the inside. And I it’s a nice feeling of being surprised by myself and my own development. In those years as an IDF-YLD representative, I’ve learned much more than I can comprehend right now.

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One of the most beautiful thing I can see with my eyes are people connected with their inner energy, with courage to take risks. brave enough to question the “status quo”, and lead by what they can create with the world they receive (not just following every rule and doing what is expected) and all of it with integrity, defending the values each one truly believe.

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Young people together represents what are that generation’s thirst for change. What they CANNOT deal/live with anymore.  Common dream? Live in a better world with diabetes.

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I have a dream to live in a world in which high-income countries don’t explore low-income countries and them give them assistance help (with their money and NGOs) that only let them more dependant and help richest countries to empower their 3rd sector economy (otherwise they would not have jobs for their people).

I have a dream to live in a world that young people don’t leave university so blind to create and do what they believe (not just what they are told to) with integrity of their own self. Thinking that science is answer to everything.

I have a dream that no one have to die or suffer because of lack of access to their rights.

I have a dream that a collective consciousness lead us to a better future than our present. Consuming things (=supporting) that ensure a fair trade with a minimal pollution during all its production and selling.

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Diabetes and Cancer: An interview with Antoane Fernandes

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diabetes awareness

Every October the entire world celebrates the Pink October regards to breast cancer prevention. Last year’s post about Pink October was informative and exclusively about breast cancer.  This year, the proposal is to understand a bit more and support people who have type one diabetes and receive a cancer diagnosis.

So I kindly invited Antoane Fernandes to share his life experience with us. Antoane is 26 years old and he lives in São Paulo (Brazil). Since he was young he dreamed to be a great actor, voice actor and singer. But he doesn’t stop there, he also has plans to make a skydiving course. He clearly has a huge thirst for knowledge reflected in his passion to met people, to experience the world and to discover himself continually.

Antoane was 5 years old when his parents got worried about him drinking too much water, constantly urinating and losing too much weight and took him to the hospital. He was diagnosed with type one diabetes. “The most significant (change in my routine) was to avoid eating too many sweets”, he says.

About two years ago, Antoane was feeling an extremely unbearable pain in his right leg. This was the symptom that he later discovered to be a testicular cancer (germ cells), which he says he is almost healed. He explains that all the pain he was suffering was there “(…)”thanks” to the tumor that compressed the veins of the leg and caused a thrombosis”.

Below is our interview. I´m not a journalist. All the questions I did Antoane were based on my curiosity to understand this situation better and thinking about you that read my blog. Being you someone curious about the topic, someone passing (or supporting family or friend) through a similar situation.

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1)      How did you receive the confirmation that you had cancer and how did it change your routine?

I accepted the diagnosis quite well. I didn’t surrender myself at any moment. I’ve always been an optimistic person and very playful. Honestly, the only change in my routine was the “monotony” because I could hardly leave the house and also could not work.

2)      Since I met you, you seemed a very optimistic, cheerful and happy person, making it look like cancer treatment is easy. You looked at the whole process with this positivity from the beginning?

Exactly, I did that since the beginning. I tried to always keep this way to also do not make my friends and relatives worry too much. Now I’m brand new, just can’t say I’m ready for another!

3)      Do you think that the fact that you have had the diagnosis / treatment of diabetes previously helped you cope with the diagnosis / treatment of cancer?

Probably, because the diabetes treatment made me adapt to many “harder” things, in terms of health, not to mention that I got used, since the age of five, with syringes and holes in the fingers every day.

4)      How did you with both treatments, cancer and diabetes?

Dealing with both treatments was easy, since no chemical prevented another and as I use insulin pump it made it smoothly and easier to control my glycemia.

5)      Speaking directly with someone who now goes through cancer treatment and who also have diabetes, what you have to say to this person that would have been important for you to hear back then?

To try to remain as calm and optimistic as possible, be always close to your friends and family and always look for fun in all ways as possible, at least that way I could get away!

6)      What are your plans / dreams for the future?

First, I intend to return to my old job at Livraria Cultura (famous bookstore in São Paulo) as a salesman. Then, in the near future, I plan to become a known actor and voice actor!

book7)      Do you think about create something to help people who are / have gone through what you went through?

I am currently writing a book about everything I went – with diabetes and with cancer – but is not finished yet. I’m doing in a way that is not boring as some biographies that have cancer theme, hope to finish it soon.

8)      Do you have any form of contact where people can get in touch with you?

Yeah, sure! People can find at my facebook profile or by e-mail antenauta@hotmail.com

Thank you very much for your inspiration, your time and all the luck in the world to your projects!!!

For more information about testicular cancer:

American Cancer Society: http://www.cancer.org/cancer/testicularcancer/detailedguide/testicular-cancer-risk-factors

Self-test:

testicular self test

Diabetes Without Borders

On June 15th, I did a presentation at  ADJ Diabetes Brasil entitled  “Diabetes Without Borders” which included the participation of Ronaldo Wielseberg (IDF Young Leader  from Brazil), Júlia Silveira (IDF Young Leader  from Portugal) and Alexandra Costa (IDF Young Leader  from Portugal) and Renan Jacomassi (Musician).

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The intention was to show:

  1. Diabetes scenario Worldwide: why diabetes education and prevention is such a big issue;
  2. How young people can make a difference: give audience a glimpse of how simple it can be with a group activity in which they had to help solve a “case”
  3. Those who are already doing: interactivity and activism on diabetes and how IDF Young Leaders in Diabetes have been doing that.

To reach that I started with a  brief presentation exposing my history and what brought me there, emphasizing dreams, purpose and cause (the desire to live in a more just and equal in opportunities to treat and prevent diabetes). Showing undiagnosed and untreated diabetes in numbers and how it impacts one´s health, public spending, prejudice and stigma in our society.

The audience was invited to sit in groups to discuss and come up with suggestions on how to attract young people with diabetes to participate on youth support groups. We had inspired people with many ideas!

Brazil lives, what many calls, a transition moment on its history. A moment that we can dream about our future. Internet connects its vast territory, many emerged from poverty, young people start to make “micro revolutions” on its own community while a bigger change is expected from politicians.

Ronaldo is a living example of how young people with diabetes are already working and making a big impact. He showed the history of diabetes, emphasising on how we have a lot of things today that we can count on to have a good control. Julia and Alexandra from APDP (Associção Protetora dos Diabéticos de Portugal) showed the Núcleo Jovem project , how is diabetes in Portugal and what are their dreams.

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Julia & Alexandra

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Ronaldo

We also counted, as you can see in all the pictures, with a mural that compiled projects from the IDF Young Leaders Krystal Boyea, Rachel Lamb, Timothée Froment, Annelieke Overbeeke, Koen Biesemans, Aminath Rahman, Jan Twachtmann, Maria Hillinger, Pauline Vignal and Margot Vanfmural

And in the end, a simple homage to our mentor Mark Barone, who runs the Treinamento para Formação de Jovens Líderes em Diabetes (Young Leaders in Diabetes Training). Thanks to his contribution we are able to make what we do today.

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Here goes more photos of the event:

The start of something new!

Dear friends all over the world,

I´m here this time to try to explain to you the (nonpartisan) manifests happening all over Brazil. Manifests that made Brazilians renew their hopes of contributing and living in a better country.

82 anos

“82 years old and I´m not kidding, I´m here to protest”

Since June 6th the population is protesting the rise of  R$ 0,20 (U$0,40) in the bus fare of São Paulo. Someone who lives in São Paulo need to work 14 minutes to afford a bus ticket (from home to work and vice-versa), in Lisbon, less than ten minutes, in Paris, six minutes are sufficient, in Buenos Aires less than two minutes. The monthly expenses with passage commits most of the wages of workers and we still have an inefficient and chaotic transportation system.

It´s true that protests against rises often happens from time to time everywhere. So, why this one is getting such a big picture? 

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Manifest on Paulista Avenue

Briefly, the movement to contain the fare rise collided with an increasing  “feeling” among young people, adolescents, adults and elderly Brazilians: a common dissatisfaction with the adverse social, political and economic developments of the country while we were expected to have an incredible growth we didn´t, and worst, inflation and interest rose. Part of this scenario consists:

  • Politicians, in all levels, are caught in corrupt acts and don´t pay for their crime. The Senate´s President, called Renan Calheiros, for example, is accused of corruption, peculation, fraudulent misrepresentation and falsification of document and it didn´t stop him to be the president of the Senate.
  • Government spending on public affairs are (almost ever) overpriced, and nothing is done to punish that. World Cup budget is already bigger than what´s planned to cost.
  • Citizens pay A LOT of taxes and we don´t see it reinvested in health, security and education. According to IBTP statistics, Brazilians work 5 months of the year just for the government (to pay taxes!).
  • Public schools are increasingly scrapped and teacher earning very little!
  • Violence in Brazil kills more than war. The number of murders in Brazil between 2004 and 2007 is higher than the low of the 12 major armed conflicts in the same period, 192.804 people were killed by gunfire in Brazil while wars have killed 169.574 people.

What started in São Paulo reached many parts of the country and beyond against fare rises, corruption, dissatisfaction on health, education and security. For example, THIS VIDEO shows protesters on our National Congress in Brazil´s capital, Brasília, and the image below show protests around the world.

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Protests outside Brazil

Perhaps, it´s just the beginning of an incredible movement all Brazilians deserve and desire. A country with more justice, equality and quality of life in addition to an amazing culture, people and geography. If all this protests will continue? I don´t know, but it´s incredible how it is spreading all over Brazil rapidly. One thing I´m quite sure, the people are more aware of its power to make changes and that´s a huge start because policymakers are aware of that too!

Photos I took from the streets

Any doubts? Curiosity? Leave a comment.

#vemprarua #changebrazil

Youth Support Group on: Dreams!

Saturday, March 16th. ADJ Youth Support Group on: Dreams.

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Funny thing is that when we have to put it in words what is our dreams, it is extremely hard. Here goes a very interesting activity that can be used in any culture. It consists in drawing a river on a piece of paper (at the “river mouth” they write the dream they want to achieve), give the participants fishes and stones .

É engraçado como é difícil dizer quais são os nossos sonhos quando temos que colocá-los no papel. Aqui vai uma atividade muito interessante que pode ser utilizada em qualquer cultura. Consiste em desenhar um rio em um papel (e na foz deste rio escrever o seu sonho, ou um deles!), peixes e pedras.

The participants should write their opportunities (on the fishes) and difficulties (on the stones) and insert them in the drawing. Inside the river goes the “fishes and stones” that are within our reach and on the margin of the river are things that are out of our reach.

O participante deve escrever as oportunidades que tem nos peixes e as dificuldaes nas pedras e inserí-los no desenho. Dentro do rio vão os peixes e pedras que estão dentro do nosso alcance, logo o que está na margens vão as oportunidades e dificuldades (peixes e pedras) que estão fora do nosso alcance.

In this image is a common result this exercise promotes: we tend see more clearly that our dreams is more in our hands than we think.

Esta imagem nos mostra um resultado muito comum que este exercício promove: nós conseguimos ver mais claramente que os nossos sonhos dependem de nós mesmos do que achamos.

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If you want to use this tool in any activity and want more details, you can get in touch with me. It would be very interesting to share its results!

Se você quiser usar esta ferramenta e precisa de mais detalhes, por favor, entre em contato comigo. Seria ótimo saber sobre os resultados que você obteve também.

And you, kept thinking about your dreams? Hands on!!!

E ai, ficou pensando sobre os seus sonhos? Mão na massa!!!

Brazilian Carnival 2013

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I´m here today to talk about the most popular celebration in Brazil held during the Friday to the Tuesday before Ash Wednesday, which marks the beginning of Lent, the forty-day period before Easter. It´s basically when the samba takes the streets of Brazil, and this year I was there too!

This year I participated on the São Paulo Carnival Parade (for the fist time on an official parade, the ones that involves a championship for the best samba school on the avenue in which the costume, music, harmony…) and I´ll share this experience with you showing how to enjoy safely a huge and exhausting Parade.

Believe me, it´s very hard to sing, dance (with a huge and quite heavy costume!), walk and continue smiling, all at the same!!! 😀 That was so funny! One fact is that is not allowed to enter on the avenue carrying anything outside the costume (it  had to be an uniform). That means that we couldn´t stop in the middle of the Avenue to check our glycemia. What did I do? Carried a little purse with glucometer, glucose, money, mobile and documents underneath the costume (near my arms).

So, to avoid any hypo or hyperglycemia:

  1. I started controlling it sooner, with a healthy dinner and little snacks between dinner and the parade (at 3 a.m.)
  2. Checked it before getting into the avenue (right before dancing a LOT of samba!) and
  3. Had  liquid glucose near my hands (underneath the costume). The rest was all about joy and the beating of the drums and I can tell you that it was AWESOME!

And for those who wants to understand a little bit more about the samba, HERE you can see how the carnival drums works. Besides that, there are several major differences between each region. Each one has its own style:

Olinda Carnival:

Olinda

Rio de Janeiro Carnival:

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São Paulo Carnival:

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Bahia Carnival:

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Minas Gerais Carnival:

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Recife Carnival:

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Hoje vou falar sobre a celebração mais popular do Brasil, o Carnaval, festa que antecede a quarta-feira de cinzas que marca o período de 40 dias antes da Páscoa. É basicamente quando o samba vai para as ruas e este ano eu estive lá também!

Acredite, é difícil cantar, dançar (com uma fantasia grande e pesada!), andar e continuar sorrindo, tudo ao mesmo tempo!!! 😀 Foi tão divertido! Um fato é que não é permitido entrar na avenida carregarndo qualquer coisa fora da fantasia (porque todos precisam estar uniformes). Isso significa não podemos parar no meio da avenida para checar a glicemia. O que eu fiz? Carreguei perto dos meus braços e embaixo da fantasia uma pequena bolsa com o meu glicosímetro, glicose, dinheiro, celular e documentos.

Portanto, para não ter hipo ou hiperglicemia na passagem pela avenida:

  1. Eu começei a controlar a glicemia horas antes do desfile, jantei como de constume e fui controlando a glicemia com correções e lanchinhos entre a janta e a hora do desfile (3a.m.)
  2. Chequei a glicemia antes de entrar na avenida (e dançar MUIIITO!!!) e
  3. Deixei glicose (carboidrato de rápida absorção) em um lugar que fosse de fácil e rápido acesso (mas ainda dentro da estrutura da fantasia, próximo ao ombro). O resto foi só aproveitar as batidas da bateria… tudo incrível!!!!

Quer saber mais sobre como é a bateria em um carnaval? Entre AQUI. Além disso, há várias diferenças regionais sobre a celebração desta festa, veja as fotos

Guest Post on Diabetes Mine

A few months ago I was invited to write about “Life with Diabetes in Brazil” on Diabetes Mine Blog. For those who doesn’t know it, Diabetes Mine is one of the biggest diabetes themed blogs in the world. Take a time to explore it, there you’ll find the most different issues related to diabetes.

So, HERE is my Guest Post.

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Blue November – part 7: Social Media

This is the last post about the 2012 World Diabetes Day activities. The most important actions that the Blue Power did are written in those 7 posts about the WDD.

With this I leave here ideas that can be spread with a little bit of the experience I had making them, so feel free to contact me and ask anything about them.

This last action was purely virtual/digital made on the young leadership facebook page (created two years ago and has today 2.428 followers). I particularly appreciate social media because it improves communication between very distant places in Brazil. This is, for me, the best way we can connect people to share, learn and develop.

We combined different messages to call for attention on the internet:

1. Brazilian Flag – Let’s protect our blue!  311424_495979070435740_177081384_n

National Flag of Brazil

This image was made to be highly spread on social media on November 14th. It connects the blue circle on our national flag with the blue circle of diabetes. In which the message was to protect the color blue of our flag. Along with the picture was shared the following   text:

“ Brazil has 12 million people living with diabetes, 50% are undiagnosed! Today is World Diabetes Day, a day of spreading this message as much as we can so that these 6 million undiagnosed people are aware of their condition and those diagnosed search for their treatments goals in order to avoid complications and premature death. Share this image, stay tuned to the main symptoms of diabetes and make exams regularly! “

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It reached 30. 613 people on Facebook, shared 558 times.

2. Countdown for WDD

A countdown was made during October and November reaching  13. 346 views in 18 publications. The message was “____ days for WDD” and the pictures had the “ (Act) United for diabetes”. Examples:

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3. Give Away

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A pin and a bracelet were given away on facebook. This activity reached 3.453 views and explained that the blue circle is the symbol of diabetes because, as the International Diabetes Federation says, “across cultures, the circle can symbolize life and health. Most significantly for the campaign, the circle symbolizes unity.” Also ” the blue border of the circle reflects the color of the sky and the flag of the United Nations.”


4. Post about the Blue Monuments

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Post about the Monuments in São Paulo city lighted in blue explaining why the monuments were blue. It had 3.138 views and the following text: “Worldwide locations are being illuminated by Blue World Diabetes Day. Pictured below are some monuments of the city of São Paulo. Share this post and help spread the blue lighting for diabetes!

 5. Publicizing

And at last, but not least, we empowered the dissemination of side events and interesting articles about WDD that Blue Power contributed, such as:

– Blue Power activities

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– TV Show with Heloisa Fagundes, an influential youngster with type 1 diabetes, that you can check HERE.

– Magazines: The interview with the american football player and type 1 diabetic, Daniel Santamaria.

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