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KrabbeConnect
United States
Приєднався 10 бер 2020
OUR MISSION
KrabbeConnect's mission is to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state of the art research by bridging the gap between science and patient knowledge.
OUR VISION
A day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease.
KrabbeConnect's mission is to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state of the art research by bridging the gap between science and patient knowledge.
OUR VISION
A day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease.
Insights and Data from the ReKlaim (FBX-101) Clinical Trial
About the Webinar (Recorded on September 26th, 2024)
This session will provide an in-depth look at the latest findings from these pivotal trials focused on treatments for Krabbe disease. Attendees will gain valuable knowledge on trial outcomes, patient responses, and the potential implications for future therapies. Whether you’re a researcher, clinician, or someone impacted by Krabbe Disease, this webinar offers critical updates and data-driven insights into these groundbreaking studies.
This session will provide an in-depth look at the latest findings from these pivotal trials focused on treatments for Krabbe disease. Attendees will gain valuable knowledge on trial outcomes, patient responses, and the potential implications for future therapies. Whether you’re a researcher, clinician, or someone impacted by Krabbe Disease, this webinar offers critical updates and data-driven insights into these groundbreaking studies.
Переглядів: 69
Відео
Caregiver Webinar: Experiences Navigating Treatment for Krabbe disease
Переглядів 782 місяці тому
This panel was recorded on September 16th, 2024. The panel, moderated by Stacy Pike-Langenfeld, explores various experiences, showcasing the challenges and triumphs in the treatment of Krabbe disease. Each caregiver will talk about their child’s journey. Each journey is unique, giving healthcare providers and newly diagnosed families "insider knowledge," of what that first year could be like af...
IKD and LIKD Study
Переглядів 568 місяців тому
A Krabbe disease study led by Dr. Nicholas Bascou. Dr. Bascou completed his undergraduate studies at the University of Pittsburgh at The Program for the Study of Neurodevelopment in Rare Disorders (NDRD). He then obtained his M.D. at the Cooper Medical School of Rowan University in Camden, New Jersey, and completed his training in internal medicine at Albert Einstein Medical Center in Philadelp...
Two Sisters Journey with Krabbe disease: The Moore Family Story
Переглядів 19 тис.Рік тому
Meet the Moore sisters. Raegan missed the window of opportunity for a potentially life-saving intervention because her formal diagnosis did not arrive until she was 9 months old. Raegan faced the heartbreaking challenges of severe neurological deterioration, loss of mobility, and a shortened life expectancy. Meet Zoey, a joyful and energetic young adult fortunate to be diagnosed with Krabbe dis...
(Uncut interview) How Grandpa Bruce Reworks Cove's Law in Georgia
Переглядів 110Рік тому
This is the full heartwarming interview with Bruce Kirbo. Grandpa Bruce went to work on Cove's Law after his grandson, Cloud, was diagnosed with Krabbe disease. Listen to how Bruce, and other advocates, successfully launched a pilot study in Georgia for Krabbe disease. Krabbe disease (pronounced krab A) is a rare genetic disorder known as globoid cell leukodystrophy. Krabbe disease is a severe ...
Cloud Family Interview (uncut)
Переглядів 8612 роки тому
This is the uncut video from our interview with the Kirbo family. Learn about all of the emotions involved in navigating Krabbe disease through the eyes of the Kirbo family. KrabbeConnect is forever grateful to Carlyle and Sloane for sharing their son's story to help further education and improve awareness about the need for additional therapies for Krabbe disease.
Grandpa Bruce Reworks Cove's Law in Georgia Final Draft
Переглядів 2762 роки тому
Bruce Kirbo went to work on Cove's Law after his grandson, Cloud, was diagnosed with Krabbe disease. Listen to how Bruce, and other advocates, successfully launched a pilot study in Georgia for Krabbe disease. Krabbe disease (pronounced krab A), is a rare genetic disorder, also known as globoid cell leukodystrophy. Krabbe disease is a severe neurodegenerative and rapidly progressing condition r...
How the Kirbo and Ellis Family Navigate Krabbe disease
Переглядів 7 тис.2 роки тому
We invite you to learn about the Kirbo and Ellis families. Both have been impacted by Krabbe disease. Cloud has a late-onset form of Krabbe disease and Cove has the infantile form of the disease. Cloud and Cove offer so much to their families despite their disabilities. Both children are surrounded by love and their families hold out hope for additional therapies to help further treat Krabbe di...
KrabbeConnect Presented the 2022 Wise Scholar Award to Dr. Joanne Kurtzberg
Переглядів 3332 роки тому
There’s no shortage of talent in the science and clinical space of Krabbe disease. KrabbeConnect believes it’s vital to honor an individual every year who has made a significant contribution(s) to Krabbe disease in one or more of the following areas: educating and improving methods to effectively recognize and diagnose Krabbe disease, advancing breakthrough research into novel treatment(s), and...
Newborn Screening Gives Jasper a Chance at Life
Переглядів 18 тис.2 роки тому
This video debuted at the KrabbeConnect 2021, A Million Dreams Gala. Learn about Jasper who was in foster care, was identified with Krabbe disease as a newborn, and how he's doing today. The Murphy family is thankful for the love and joy Jasper brings to their home.
Dr. Allyson Bradbury Pivotal Work in Krabbe disease
Переглядів 3853 роки тому
This video was first debuted at the 2021 KrabbeConnect, "A Million Dreams," gala. Dr. Allison Bradbury has evaluated disease mechanisms and developed gene therapy approaches for Krabbe disease. The Bradbury Laboratory is dedicated to understanding disease mechanisms and developing therapeutic approaches for rare, pediatric neurodegenerative disorders. Advances in adeno-associated virus (AAV) ve...
Webinar: Rationale for Reduced-Intensity Conditioning (RIC) Transplantation in Krabbe Disease
Переглядів 2003 роки тому
one marrow transplants are utilized in patients diagnosed with Globoid Cell Leukodystrophy (Krabbe) to help treat the debilitating disease. However, some of the chemotherapy medicines utilized to suppress the immune response can leave a patient managing troublesome side effects. Thus, transplant specialists are pioneering a new way to conduct bone marrow transplants in patients with non-maligna...
2021 A Million Dreams Gala
Переглядів 1183 роки тому
Did you miss the gala on Friday, September 24th, 2021? No problem, you can view it here now. KrabbeConnect is truly thankful to be here, providing those directly living with Krabbe disease educational resources to make difficult decisions a bit easier, connecting them to rare disease experts, and participating in research efforts to help #curekrabbe. We hope you feel informed and inspired by th...
KrabbeConnect Gala 2020 Short Interview with Grujicic Family
Переглядів 1,7 тис.3 роки тому
This video was utilized for the 2020, "A Million Dreams," Gala. A great story of a family impacted by infantile Krabbe disease. If this story moves you, help us reach a cure by donating at KrabbeConnect.org today.
Nikola's Krabbe Disease Story: Extended Interview
Переглядів 92 тис.4 роки тому
Nikola's Krabbe Disease Story: Extended Interview
Krabbe Disease: An Autosomal Recessive Disease
Переглядів 5 тис.4 роки тому
Krabbe Disease: An Autosomal Recessive Disease
Krabbe disease: One Parent's Journey
Переглядів 14 тис.4 роки тому
Krabbe disease: One Parent's Journey
Partner With Us KrabbeConnect final video
Переглядів 8684 роки тому
Partner With Us KrabbeConnect final video