Always in Hope is not about any particular rare disease but rather, what it’s like to become, and experience life as, a member of the Rare Community. The community is not an official organization or group you sign up for. But it is one of the largest communities on the planet, comprised of millions of people of all ages, ethnicities and economic backgrounds. They are brothers and sisters in arms, who have been called into action to fight for something that many take for granted… health and well-being.
We begin our Always in Hope journey as does everyone who at first unknowingly joins the Rare Community… with a discovery. We meet people who know nothing of the road ahead. They notice a seemingly meaningless abnormality in their child’s development, a parent’s demeanor or even something that’s “not right” within themselves. It could begin with something as simple as a skin irritation, a muscular twitch, a forgotten memory or a medical test result that is out of the ordinary. In other cases, it’s a much more defining and dramatic event like an abnormal ultrasound a testing positive for a genetic disorder. Whatever the case, their world has changed and they have become, whether they know it or not, members of the Rare Community.
Once people become aware that “something’s not right”, their initial emotions are inevitably followed by months or even years of stress, frustration and heartbreak. They have no choice but to search for answers themselves. Through personal research and investigation they seek out medical opinions from doctors and medical experts. They reach out to others who share similar challenges. Their involvement in the community inevitably grows as they explore their options and hope to find a definitive diagnosis.
Symptoms typically intensify as the disease progresses. As tough as that is, when and if they are finally diagnosed, they find more often than not, there are no treatments or cures are available for what ails them or their loved one.
No matter the case, whatever the disease, the commonality in all of these Rare community members is; through it all they are always in hope that a treatment or cure is just around the next corner.
Ultimately, these families and individuals learn that the process of developing drugs and technologies for treating and curing disease, is slow, expensive and covered in red tape. Out of necessity, many take matters into their own hands and become advocates; brave soldiers who fight for their particular disease. They stand tall as they launch non-profit organizations to help themselves and others in the same situation. They raise awareness and build a community within the community. They become the voices of change as they raise funds for research and drive innovation that helps us all. They are true heroes in a war that is not often won. Amazingly, they know this fact but yet they persist. They must. It is without choice and it is their everlasting hope keeps them going as they wage their battle against a rare enemy they now know.
As is the case with any battle, it changes life forever. Whether you are one of the lucky ones who find a treatment or cure and live a relatively “normal” life, are one of the many who have to live with the repercussions, or are a friend, colleague or family member of someone who has been laid to rest after losing the battle, you too are forever a member of the Rare Community.
Throughout the film we will meet these courageous individuals who have experienced every step of this all-too-common Rare journey. We will feel their pain and witness the broad spectrum of emotions that are integral to living a Rare life. Ultimately we will come to understand how unconditional love drives them forward and why they have been and will remain, Always in Hope.