Donations that save lives - or burn reputations

Recently, a scandal has erupted involving the potential misuse of internet donations for a baby suffering from the most serious type of genetic disease called Spinal Muscular Atrophy (SMA). The family from the city of Joinville, in the Brazilian state of Santa Catarina, was unable to meet the financial costs of the child's treatment and began an online mobilization campaign called "AME Jonatas". They were so successful that they raised more than $ 1 million in a few months.

The problem came when suspicions arose that part of the grant money was being used to cover a standard of living that was incompatible with the family situation before the campaign. Photos of a recently purchased luxury car and a holiday trip to a tropical paradise, in addition to the lack of detailed accounts of the use of donated resources, opened a veil of suspicion that reached the court, which ended up blocking the family accounts.

Public campaigns involving the direct support to people - especially children - with urgent needs and risk of life are the ones that frequently have the most chance of arousing collective solidarity.

This type of campaign involves three fundamental elements:

• a very deep personal history, which generates an immediate connection,
• an urgent situation, which encourages immediate action,
• sense of personal satisfaction, for contributing to a situation that could affect anyone, including a child of ours.

But the impact of a story like that of the Santa Catarina family goes far beyond the family drama.

One of the consequences of the wide coverage the case has been receiving is to generate a general distrust of similar campaigns, especially those initiated by individuals. In fact, separating the tares from wheat in terms of the correct use of the resources received is very difficult and people's first reaction is to hold their donations to similar cases for fear that the resources are not being used properly.

In order to avoid refraction in donations and to stimulate people's engagement, it is essential, first and foremost, to be absolutely transparent. The Internet and social networks are here to help. All accounts related to the donation campaign must be opened and publicly displayed, with each new report being communicated via Facebook, Twitter, or another resource. There needs to be a direct communication channel to answer any questions that may arise.

Transparency must be understood not as a virtue, but as an obligation. That involves also making it clear at all times what the resources are being asked for, and what they are actually being spent on. This equation is not always perfect, as sometimes it is necessary to change the destination of what was initially requested. Whenever that happens, it is necessary to explain to people.

This is coupled with another important element: you need to take care of the campaign’s storytelling. As long as it's on the air, your story needs to be told all the time, preferably on a personal level.

It is important to show donors how donated resources are being used and impacting the lives of those involved. Every victory deserves to be celebrated collectively. Each new challenge or difficulty must be shared with the donor community, which may feel encouraged to continue supporting. And any major change needs to be communicated publicly.

All this will strengthen the connection and credibility of the campaign and its creators, which diminishes, but does not prevent, criticism or denunciations from arising, especially in the conflagrated environment of social media. If that happens, the transparency stance is the best safeguard. Do not shy away from facing any criticism immediately, with clear and verifiable information on the progress of the donation campaign.

Urgent and extreme cases like that of children suffering from Spinal Muscular Atrophy often rely exclusively on collective solidarity to give parents hope and lessen the suffering of the little ones. But unfortunately, the Internet Tribunal is very volatile and cruel and we must not let ourselves be carried away by the wave of persecution and aggressions that follow in cases like the one from Brazil’s Santa Catarina.

Research, ask direct questions to campaign promoters and be sure to give each time you feel connected and confident. In reality, we never know if it will ever happen to us.