Vicki and Fred Modell have spent years since their son’s death in the 90’s advocating for more research and assistance to be provided to those with primary immunodeficiency disease. Their son was born with the disorder and he eventually died in 1986. He was 15 years old.
Although both parents had no desire to be in front of the press or be the start of an advocate program, they were motivated by the fact that no one else was talking about the disease that took their son’s life. Primary immunodeficiency is a disease that made their son very susceptible to many things-the tiniest sore throat or the slightest cold could have dire consequences. Primary Immunodeficiency disorder is a genetic immune disease that currently has no cure.
One year after their son’s death, the Modell parents created the Jeffrey Modell Foundation in 1987 and they become spokespeople -speaking to Congress and participating in politics to lobby for their cause.
Back during their son’s death in the 90’s, when people heard of a teenage boy dying of an ‘immunodeficiency disorder’ the first thought was of the ‘acquired’ immunodeficiency disease or AIDS as it was during the midst of the AIDS crisis. The Modell’s goal was to distinguish the difference between the two diseases without making either one less important.
In fact, a new documentary that came out in June, is showcasing their journey into the research and fundraising this couple did to get the attention of Congress.
“Do Something,” the new documentary, shows the political climate of the 90s and aims to encourage all Americans to share their own experiences with Congress. These collective stories can be a vital and compelling perspective that helps Congress members to decide where to allocate funding. The film was even screened on Capitol Hill on June 3rd of this year.
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