Every year, on the last day of February, the world comes together to observe Rare Disease Day – a day dedicated to raising awareness about the challenges faced by individuals and families affected by rare diseases. Over 300 million people globally are living with a rare disease, and research is the cornerstone of understanding and treating rare diseases. Unfortunately, due to their rarity, these conditions often receive less attention and funding compared to more common diseases.
Further, on February 7th, the National Institutes of Health (NIH) announced a drastic, immediate reduction in overhead funding for universities, medical centers, and research institutions. This change, which is currently on hold in federal court, will remove an estimated $4 billion annually from the infrastructure supporting medical research across the country, impacting more than 2,000 universities and medical centers. This significant reduction jeopardizes essential research, including groundbreaking work on treatments for Schaaf-Yang Syndrome (SYS) (read more: https://www.fpwr.org/…/urgent-action-needed-nih-cuts… ). As a result, private funding to advance rare disease research is more critical than ever.
The zebra is the official mascot for Rare Disease Day and rare disease patients. Historically, medical professionals were taught “when you hear hoofbeats, think horses, not zebras,” encouraging doctors to consider common conditions first before rare ones. This Rare Disease Day, you may hear some stomping coming from our house, but its not a horse or a zebra! It’s Hayden (https://youtube.com/shorts/47z_gpYiqhs)!
Because of the medical research that preceded her, we were able to start therapies early and give her the best opportunity to achieve her potential. We were told when we were in the hospital that Hayden may never be able to hit typical milestones, including walking. Because of the therapies that are now available to her, and her hard work and dedication, Hayden is hitting milestones that we didn’t know were ever possible.
It’s because of funding from our friends and supporters that we continue to have hope for Hayden hitting more milestones. We are also incredibly encouraged by groundbreaking research that is going on in the rare disease space, including SYS. With your donations and support, we can make more therapies, and maybe even a cure, possible to improve the lives of Hayden and others living with SYS. This year on Rare Disease Day, we raised $15,300 with your generous support. We can’t thank you enough.
With love,
Matt and Courtne
