AMDA PATIENT ADVISORY BOARD

The AMDA is pleased to announce the members of the AMDA Patient Advisory Board: 

Jim Burroughs is the father of Morgan (9), a child that is receiving treatment in the infantile EAP. Jim and his family live in Louisiana.

Jeff Harvey is a late onset patient that lives in Virginia. Although Jeff (34) is severely affected, he does not meet the criteria for the LO-EAP (late onset early access program).  He is not receiving treatment. 

Tiffany House (22) was the first juvenile patient to receive ERT in the original transgenic trials that took place at Erasmas Medical Center in Rotterdam, the Netherlands.

Deb Koncel is the mother of John, the first infantile patient to receive ERT in the original Duke University CHO trial in the US. John (4) passed away in April 2003, after a heroic fight against Pompe disease. You can read John’s story on the web at:  http://www.amda-pompe.org/patients.htm Deb and her husband, Barry, are the proud new parents of a baby boy that is unaffected by the disease.  

These people bring with them expertise in the many different areas necessary to coordinate and facilitate patient services that will benefit all Pompe patients.  They, along with the AMDA board of directors, will continue to advocate for the rights and needs of people diagnosed with Pompe’s disease.