@fraaseo Yes, in 2004 I had genetic testing by Kenneth Offit, MD, the chief of Genetics at MSKCC and I was positive for the SDHD mutation. Luckily I only passed the gene to one of my children who is multiply handicapped and resides in a group home and will never have children herself so I never have to worry about passing on the active disease. This daughter is still checked yearly with bloods and 24 hr urines.