A resource library at your fingertips!
This library was established to inform patients, caregivers, and others, on the research conducted on Krabbe disease. Scientific research enhances diagnostic tools and advances treatments yet, published articles often result in access and medical dialect barriers. The library, currently in the initial stages, will alleviate this obstacle by providing access to published articles, graciously renovated into patient-friendly context by KrabbeConnect, to ensure those living with Krabbe disease are connected to the research.
A 3-minute video with Krabbe disease expert, Dr. Joanne Kurtzberg, and 4 amazing transplanted Krabbe disease patients. We’re so thankful for transplant to help patients with this rare neurological disease live a better life. Yet, it’s important we share this video as transplanted patients need additional therapies to ensure they can continue living their best life.
Dragon and Lana, parents of Nikola, sit down with KrabbeConnect, to share their Krabbe disease journey. Krabbe disease is a rare neurological disease that results from the loss of the protective covering (myelin sheath) surrounding nerve cells. Dragon and Lana, residents of Virginia, share their story with the hopes of further educating the medical community and others about the need for nationwide newborn screening to allow Krabbe disease patients to live their best life. KrabbeConnect extends their deepest gratitude to the Grujicic and Studio Center for this educational video.
Please join us live on October 10th, 2020 for our, “A Million Dreams,” gala as KrabbeConnect highlights patient stories, embraces the generosity of our corporate sponsors, pays tribute to those patients diagnosed with Krabbe disease, and fundraises to the max to reach a day in which each patient can live a life free of Krabbe disease. As we gather safely from our homes, we want our community to know we are working harder than ever to unify work to #curekrabbe disease. KrabbeConnect cannot make this happen alone. We need the Krabbe disease experts, clinicians, researchers, family warriors, friends of the foundation, and our very important corporate sponsors to help change the lives of those born with this devastating disease. We guarantee you will leave this event feeling inspired, altruistic, and eager to follow our journey to success–A CURE!!
How did this happen? How did my child inherit Krabbe disease?
You’re not alone in asking this question. This is one of the most common questions asked when one learns that their child or loved one has been diagnosed with Krabbe disease. To learn more about how an individual inherits Krabbe disease, follow the link to a short video about autosomal recessive inheritance.
Patient Journey and Resources Maps
The Krabbe disease Patient Journey Map works by simplifying the two pathways of Krabbe disease: the symptomatic and the pre-symptomatic journey. The symptomatic pathway relates to patients who receive a diagnosis with the presentation of clinical symptoms such as, severe acid reflux, stiff muscles, seizures, loss of milestones, lower limb weakness, and more. The pre-symptomatic pathway relates to patients identified through newborn screening or those with a prior family history of Krabbe disease. Both pathways provide a systematic breakdown of steps and options for treatment, monitoring, and supportive care. The Patient Care Support Resources Map works to provide patients, caregivers, and the medical community a snapshot of what is available to assist them throughout their Krabbe disease journey. These resources are meant to give our newly diagnosed families and those working in the medical community the ability to comprehend their treatment options and quickly navigate support resources in a small amount of time.