The 2012 International Conference for Glycoprotein Storage Diseases and the extension of the Natural History Study will take place in Charleston South Carolina July 27th - July 30th 2012.

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May 19, 1999 - A much-awaited call came from the University of Minnesota yesterday. We have a bone marrow donor! Our donor is a 22 year old male from the U.S.  He will have his bone marrow harvested June 17th!

Jenny will begin out-patient treatment at the University of Minnesota on June 1. She will then be admitted to the University of Minnesota Fairview Hospital on June 8. She'll have 9 days of chemotherapy and radiation therapy to destroy her stem cells, knocking out her blood and immune system. Then on June 17th she will receive the new bone marrow from our wonderful donor.

This new bone marrow will have a normal amount of mannosidase and so from that point on, when Jenny's (new) stem cells are making blood, it will have this all important enzyme--mannosidase. With the normal level of mannosidase, whenever Jenny's body sloughs off old cells they will be completely destroyed and her body will be rid of them (like the rest of us). This will be the end of the progression of this horrible disease.

Call or write us if you have any questions or advice, we're new to this too!

Keep us in your prayers.   

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