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Rafael and George in our hearts

10th December 2014

Every thing start on 1988, my brother was 6 years old when my parents found out that he was affected by ALD. He was the yongest and the only boy in the family. My parents did as much as they could to find information about ALD, it was very hard for all of us, they brought my brother to Orlando, Miami to be treated by a Doctor that was doing research at that time (1989), my brother passed away there, he was 7 years old. A couple of years later my cusin George start presenting the same symptoms, we all knew the end but we didn´t expect that it will take so long. His mother dedicated the last ten years to take care of him and tried to make his life less painful and more confortable. Geoge was a fighter, he had many crises. But now he rests in peace, he passed away a couple of weeks ago (november 2nd, 2005). Rafael and George, we´ll miss them, but we know they are now in heaven. After we did a test, we found out I carry ALD, so now I´m looking for information that can help me and future generations in my family to avoid having sick kids.

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20 hours ago

ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at dawn.laney@emory.edu or ‪404-778-8518‬. ...

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