During this holiday season, most of us will spend time gift-giving and sharing delicious feasts with family and friends. These priceless moments get repeated yearly without ever imagining them differently. So how does it feel for individuals facing a rare condition and their families? They see the year ahead no differently but with the conviction that their child or loved one has a right to live, to receive a life-altering therapy, and potentially be cured of their condition.
At Liv4The Cure, whose mission is to advance science and technology for rare chromosomal deletion syndromes (with a special focus on Wolf Hirschhorn Syndrome), our wish is to create this hope and alter the current ecosystem for the rare disease community. Our children inspire us to do more and be relentless in our pursuit of a better future for them and others like them. Let us not forget that rare diseases affect 30 million Americans, 1 in 10 people, or 350 million people worldwide.[1] Whichever of these statistics makes the point, shockingly half of those impacted are children.
This holiday season, many children’s eyes will sparkle and imagine Santa and his reindeers making a visit to their home. They will awaken from their slumber and see the gifts under the tree. Memories are in the making and for a child with a rare disease it is no different. However, for that child’s parents, we continue to hope and believe our wish may come true. A wish that a new scientific, genetic, or technological discovery or perhaps even A CURE will come to fruition and translate into improving the quality of life for their child and future children faced with a rare disease.
Our organization invites you -- the research community, academia, the government, and the private sector-- to resolve that 2024 will secure the necessary attention to this important public health issue, that it receives the rightful attention it deserves, and that research funding is secured for our children and future generations. We invite you to join our community to make this wish. With your help, we can make this wish a reality and move mountains for our rare disease community. As Martin Luther King Jr said, “Everybody can be great, because everybody can serve.” You can do something to help us, please join us by visiting liv4thecure.org and learning more.