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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Doug Lynch

Doug Lynch is 41 years old and he was diagnosed when he was 37. He had all the symptoms related to the disease during his life.
He lives in New Zeland and he says he is lucky as he does not have to work “The NZ government gives me a nice handicap benefit to live off” says Doug.
He has a family and he says his 2 boys give him a reason to keep going in life. His hobby is to paint. He paints using 1 colour and lots of greys because of his colourblindness
He also has a message for all Wolfram syndrome patients:
“WS is a horrible thing, but we must keep going. Try to find something you like and are good at. Don’t let WS hold you back”

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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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Leonardo Sabino

Leonardo Sabino is 29 years old and was officially diagnosed with Wolfram syndrome 4 years ago.

Tragically, the pacient says he developed blindness in a short time when he was just 18 years old. Leo also suffers with osteoporosis, severe hearing loss, bladder issues and diabetes mellitus.

Even having a lot of symptoms, you will not find a more charismatic  patient than Leo. “Every day when I wake up I receive a voice message from Leo wishing me a nice day and asking me how the westher is like in Porto Alegre. He is always funny!” , says Rafaela Ungaretti.

The patient’s willpower is  too big. He is currently taking a braille computer technical course and tactile pounds course with a deaf, blind and mute teacher. He also took an archeological technical course and he wants to apply to university this year.

The WolframInside is very proud of him!

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