Polycystic Dominate Kidney Disease/Asthma

My six year old granddaugher was diagnosed with PDKD at age one. She has been on high blood pressure medicine since age one and has Asthma as well. Multiple trips to the ER, latest was last Friday due to chest pains and an irregular heart beat. Out of pocket expenses are huge. I have tried to locate an Organization that helps parents with children suffering from this disease but have been unsuccessful. The Kidney Foundation will not become involved until a transplant is needed. We are hoping her kidneys will last until she's in her 'teens', but no guarantees on that. Does anyone here deal with this? I would be interested in started a Foundation for this but have no clue how to even begin. There are very few Pediatric Kidney Specialists in the DFW area and her Kidney Specialist office is always full with children who have kidney disease. Many hospitals help with cancer and leukemia but not one helps with this disease. It too is a life threatening disease and I know other parents need help.