Survey and fundraising update – August 2016

RISA put out a survey in June 2016 to get a better understanding of the impact of infant reflux on people’s lives. The response was overwhelming. Families everywhere wanting to contribute hoping that their stories might make things better for other families if someone in authority could hear and see what they’d been through.

With that in mind we want to have the data we’ve collected independently and professionally analysed and want to engage someone to do that work. We estimate that stage one will cost about $3600. A detailed breakdown of that cost is on the GoFundMe appeal page below.

We would like to raise these funds as quickly as possible so the results are current at the time of publication.

We believe this data is a game-changer. We think that if the medical establishment are truly able to hear and understand this very large and heartbreaking story, they won’t be able to fail but take steps to make a change.

We believe as a result of this horrible and difficult disease, children and their parents lives are often put in danger. And that is not an exaggeration. Extreme sleep deprivation does horrible things to a person. Quite aside from becoming a danger behind the wheel, parents are forced to sleep their children in dangerous positions against their better judgement, without medical imprimatur and often in secret. Rates of pharmaceutical prescription for this condition should be the least of our concerns.

This is a high risk group that desperately needs attention and this data can provide it if we can only elicit its story accurately and in a way that will withstand scrutiny. And contribution you can make to our crowd-finding effort that we’re launching tonight will be an immense help.

We can only thank you in advance for understanding how important this work is and supporting it. All donations will be tax deductible.