Blog

(Português do Brasil) Dia Mundial das Doenças Raras

Sorry, this entry is only available in Brazilian Portuguese.

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I’m already registered, and you?

Be My Eyes is a free mobile app designided to bring sight to the blind and visually impaired. With the press of a button, the app stabilizes a live video conection between the blind and visually impaired users and sighted volunteers. Everyday volunteers are lending their eyes to solve challenges, both big and small, in the lives of our warriors.
If you want to help and be a volunteer or if you are blind or visually impaired, click on the link below and make your registration:
http://bemyeyes.com
Working together we can be stronger and win many challenges!

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WolframInside participate to the fundraiser of The Snow Foundation in USA

Last September 30th Rafaela Ungaretti was invite by The Snow Foundation to participate to the fundraiser at The Four Seasons Hotel located in St. Louis, USA.
On behalf WolframInside, during the fundraiser, Rafaela spoke about your project. The night also was attend by the resercher Dr. Urano and the Wolfram syndrome patient Lauren Gibilisco. They also got up to the stage to spoke behalf of the disease.
Thank you The Snow Foundation for this incredible oportunity and for representing all the Wolfram syndrome patients around the world throught the beautiful work you have been doing during those years. Congratulations!

WhatsApp Image 2017-10-15 at 19.04.15

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WolframInside – Interviewing Leo

On the new video we will meet Léo, he is 29 years old, lives in Guarulhos-SP and has Wolfram. We already talked about him on the site
Léo is the first interviewee of the channel, we exchanged experiences and he told what it’s like to live with Wolfram.
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(Português do Brasil) Subcomissão Especial sobre Doenças Raras

Sorry, this entry is only available in Brazilian Portuguese.

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Traveling with Wolfram – Mexico

New video on my youtube channel “Wolfram Inside”. In this series “Traveling with Wolfram”, I show what it’s like to get out of my routine and know a new place with a different culture. My first trip alone was to Mexico, watch and learn about travel with Wolfram!

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Where to find us” and follow us

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A way of hope

I am a Wolfram syndrome patient and that is why I need to be very careful with my health and doing medical appoitments is very important to me.
Thanks to my parents dedication I have the opportunity to have medical appoitments in United States.
Last May 17th, with my mom and sweet Renata Curtin, I had the pleasure to know a place called “Center for Advanced Medicine” located in St. Louis, Missouiri.
At this place, I had many medical appointments with ophtalmologist, neurologist and endocrinlogist accompanied by the Washington University, researcher Prof. Fumihiko Urano.
All of us are wishing that Dr.Fumi’s study and others studies dedicated to this disease can be a way to hope for WS patients.

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Wolfram Inside and its meaning

The choice of the name and the logo of the Wolfram Inside left me afraid since the beggining of the first project’s feature. But I was very lucky to have found wonderful people during all the created process. There were a lot of meetings discussing the name and the logo of the project but we always knew they appeared at the right time.

Until one day, Denise Lopes (creator of the logo and professional of graphic design) presented us an amazing and beautiful idea for the choice of the logo. The thinking of the W representing health beats is very touching and extraordinary. Yes, all Wolfram patients can live. Cheers to live! Choosing the name was more complicated but one day it arrived. I love an American TV series called Gossip Girl which has a character called Dan Humphrey who wrote a book called INSIDE. In this book, Dan wrote about how is into the world of the Upper West Side. I joined the book with my website where I would speak about how it is, inside, to be a Wolfram patient. That is why the name Wolfram Inside. Could you imagine, couldn’t you? Where we least expected, we found the best.

But these two componets were not enough. We wanted something else. Guess who entered the story later but had a crucial role to the project were Renata Leiria and Vini Marques (advertising executives professionals). They have created the moviment #WolframInside to promote the project on the social networks. And it was successful for the launch, and the results were more than hundred pictures posted on the social media.

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