Видео 21
Просмотров 155 659

17:00

Two Sisters Journey with Krabbe disease: The Moore Family Story

10:08

(Uncut interview) How Grandpa Bruce Reworks Cove's Law in Georgia

29:29

Cloud Family Interview (uncut)

31:30

Grandpa Bruce Reworks Cove's Law in Georgia Final Draft

4:46

How the Kirbo and Ellis Family Navigate Krabbe disease

11:01

Caregiver Webinar: Experiences Navigating Treatment for Krabbe disease

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 after a Krabbe disease diagnosis.

Видео

17:00

IKD and LIKD Study

Просмотров 455 месяцев назад

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

10:08

Two Sisters Journey with Krabbe disease: The Moore Family Story

Просмотров 16 тыс.Год назад

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

29:29

(Uncut interview) How Grandpa Bruce Reworks Cove's Law in Georgia

Просмотров 107Год назад

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 ...

31:30

Cloud Family Interview (uncut)

Просмотров 835Год назад

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

4:46

Grandpa Bruce Reworks Cove's Law in Georgia Final Draft

Просмотров 2662 года назад

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

11:01

How the Kirbo and Ellis Family Navigate Krabbe disease

Просмотров 6 тыс.2 года назад

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

5:09

KrabbeConnect Presented the 2022 Wise Scholar Award to Dr. Joanne Kurtzberg

Просмотров 3192 года назад

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

7:49

Newborn Screening Gives Jasper a Chance at Life

Просмотров 18 тыс.2 года назад

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

4:26

Dr. Allyson Bradbury Pivotal Work in Krabbe disease

Просмотров 3562 года назад

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

53:54

Webinar: Rationale for Reduced-Intensity Conditioning (RIC) Transplantation in Krabbe Disease

Просмотров 1812 года назад

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...

49:39

2021 A Million Dreams Gala

Просмотров 1102 года назад

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

6:01

KrabbeConnect Gala 2020 Short Interview with Grujicic Family

Просмотров 1,6 тыс.3 года назад

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.

2:44

Krabbe disease Tribute

Просмотров 1,4 тыс.3 года назад

A one-of-a-kind tribute to our heroes on KrabbeConnect.org. These are the faces of patients living and no longer living with Globoid Cell Leukodystrophy (Krabbe disease). This video closed out the 2020 A Million Dreams Gala to remind our community that we need to continue the fight until we #curekrabbe. Learn more about this disease at KrabbeConnect.org