My Nonprofit Reviews

Two of our children have PH1 and OHF has been our lifeline for over 15 years. The passion and dedication of everyone at OHF is what drives the fight to end the Hyperoxaluria diseases. OHF respects the patient voice and hears our needs. They make sure we never fight alone and that no one is left behind. OHF is our strongest advocate and source of education and research. We have hope for a future because of all that OHF has done and who they are.

Oxalosis and Hyperoxaluria Foundation has been a critical piece to our support team. Two of our children were diagnosed with Primary Hyperoxaluria Type 1 (PH1). Our youngest son (Matthew) went into end stage renal failure at 5 months old and needed daily dialysis until he received a liver and kidney transplant when he was 2 1/2 years old. Our oldest child (Molly ) is "stable" and living with this disease. It is very frustrating to have two children with a disease that is very rare and most doctors having little or no knowledge about the condition or its treatment. We are very fortunate to have knowledgeable specialists who treat them now, but it wasnt always that way. We relied heavily on OHF for information that would help educate the local physicians on treatment for our children until we could get to our specialists. OHF provided us with answers and with a sense of community. They let us know we were not alone and helped put us in touch with other families on similar journeys. Sharing accurate information is critical to getting the best treatment options for each patient. OHF helped us with that. Our children presented with their disease very differently from each other. OHF has helped us understand the differences in our children's disease and answers to questions about what is being done to research it. They help families deal with the entire process and give us hope for a better future. The hard work and dedication of OHF will lead to a treatment and cure for PH patients. The research they are doing gives us hope that our daughter might be able to find a treatment before her condition worsens. That hope is everything.

Two of my children have PH1. When my youngest child, Matthew, went into kidney failure at 5 months old, ohf became our lifeline for getting information about this disease to family and friends. It was this organization that educated us on the disease. As our son received dialysis and was placed on the transplant waiting list, we feared our daughter who also had the disease would soon follow. Getting information from ohf and talking to other families helped us deal with our fears. She is still stable with functioning kidneys and Matthew received his liver kidney transplant last year. We were for theatre enough to get media to cover out story and have a mini documentary done while we were still awaiting transplant. Ohf uses that documentary on Matthew to show others what they might expect with a child suffering from PH. Having a rare disease is challenging, especially when most doctors have never heard of it and misdiagnose it. Having ohf.org is critical for a family to refer back to for accurate information and to know they are not alone.