Welcome to KrabbeConnect
KrabbeConnect seeks to revolutionize the practice of medicine by identifying, optimizing, and implementing advances in the care and cure of globoid cell leukodystrophyAnother name for Krabbe disease, a rare and usually fatal disorder of the nervous system., utilizing a multicenter network. Our goal is to achieve complete krabbe disease eradication through cooperation between patients, patient advocacy groups, clinicians, researchers, industry, and government. We are dedicated to the cooperative planning, implementation, analysis and reporting of controlled clinical trials, as well as observational studies and educational activities within the Krabbe community. KrabbeConnect is committed to pioneering a patient-centered care model and strengthening groundbreaking research by engaging the patients and caregivers with the Krabbe research community, to ensure the needs of Krabbe patients are being voiced.
Our Heroes
Current & Upcoming Events
September 2024
Leukodystrophy & Newborn Screening Awareness Month
September is LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh... and Newborn Screening Awareness Month! The goal is to encourage parents, healthcare providers, and policymakers to advocate for the inclusion of more conditions, like leukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh..., in routine newborn screening panels. Read More
Saturday, September 7, 2024
Ten Candles, Endless Hope: Tori’s Birthday Benefit to #curekrabbe
This event is new and it’s replacing our “A Million Dreams Gala.” Why? It’s important to KrabbeConnect to move things around the country giving other families the opportunity to witness the generosity of the community and to attend these special events. Welcome to the Ten Candles, Endless Hope event page, dedicated to Tori’s Birthday Benefit in support of the […] Read More
October 5-12, 2024
Anywhere Strides 5k Walk/Run to #curekrabbe!
Join us for a meaningful journey towards a cure! Anywhere Strides invites you to lace up your sneakers and join our 5k walk or run, all in support to #curekrabbe. By participating in Anywhere Strides 5k, you’re not just taking steps or running miles – you’re making strides towards a cure for Krabbe disease. Your […] Read More
We know how hard the holidays can be especially for those in the hospital undergoing treatment for #KrabbeDisease. This program helps ease that burden. More information coming soon!
#curekrabbe
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We wouldn't be successful at our mission without the support of so many wonderful people helping #curekrabbe! Check out the fundraiser below to help #krabbeconnect
Thank you, Brittany!How many would be interested if we offered poinsettias through ABC Wedding Essentials, LLC for the holiday season to raise money for a non-profit, KrabbeConnect?
Many of you know that Bentley was diagonosed with Krabbe at age 2. If you want to know more about his disease, visit here: krabbeconnect.org/krabbe-disease/newly-diagnosed/what-is-krabbe/
He underwent chemotherapy and a stem cell transplantTypically this refers to a bone marrow transplant with the goal of replacing non-working cells with healthy working cells. Bone marrow is a rich source of stem cells that have the unique ability to ..., is now monitored annually at Pittsburgh, and we are hopeful that one day he will be a candidate for the new gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many ... trial that is still in early stages. We work hard everyday to advocate for what he needs as it is ever changing and we know how it is to financially struggle through all of this.
We have been extremely fortunate this year with lots of positive things happening in our lives. This year as we prepare for our Pittsburgh trip In February, we are not so much worried about finances for the first time, which is a blessing in itself.
Bentley made and continues to make such an impact on those he encounters, that we would like to extend that impact to those dealing with the same obstacles that we know so well. We are in the process of working on a few fundraisers, but wanted to start with the idea of poinsettias for the holidays?
All proceeds would be donated to Krabbe Connect who is constantly in touch with Krabbe families all over.
Prices for poinsettias would likely be around $16-$20 to maximize proceeds for a cause near and dear to our hearts!
Who would be interested??
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This is a friendly reminder that after November 1st, we will close the data collection portion of this study. We are seeking a few more families in the following categories:
1. Late-Infantile Krabbe disease (symptomatic after age 1) who have been treated
2. Late-Infantile Krabbe disease (symptomatic after age 1) who have NOT been treated.
3. Early-infantile Krabbe disease, identified at birth and did NOT receive gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many ....
**Stipend provided to families who participate**
Thank you to all the families who have participated already. Thank you to the Rosenau Family Research Foundation for the grant funding for this study.
#curekrabbe
IKD/LIKD NBS Study - KrabbeConnect
krabbeconnect.org
Parent-Reported Disease Burden in Infantile and Late Infantile Krabbe Disease; A Comparison of Quality-of-Life Outcomes in Transplant and Non-or-Late Transplant Patients The study intends to gather va...0 CommentsComment on Facebook
The KrabbeConnect Hero page was created for individuals living and no longer living with Krabbe disease. This page helps others understand the impact of the disease, educates healthcare professionals and companies on the numerous lives affected by Krabbe disease, and provides a place of remembrance. Visit krabbeconnect.org/our-heroes/ to add your hero!
#curekrabbe #krabbeconnect
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We invite newly diagnosed families to review the details about hematopoietic stem cell transplantTypically this refers to a bone marrow transplant with the goal of replacing non-working cells with healthy working cells. Bone marrow is a rich source of stem cells that have the unique ability to ... or HSCTHematopoietic stem cell transplantation (HSCT), a type of transplantation using multipotent hematopoietic stem cells typically derived from bone marrow, peripheral blood, or that from umbilical cord b... for #krabbedisease on KrabbeConnect.org
We also encourage newly diagnosed families to consider printing out KrabbeConnect's list of questions to help gather the most information about HSCTHematopoietic stem cell transplantation (HSCT), a type of transplantation using multipotent hematopoietic stem cells typically derived from bone marrow, peripheral blood, or that from umbilical cord b...
Should newly diagnosed families need additional assistance in ensuring they've been informed of all their treatment options - trained advocates are available at 1800-800-5509
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Change in rare diseases happen because of rare disease parents working together to make change happen. The EIKD/LIKD needs a few more participants in the following categories:
-EIKD transplanted but no gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many ...
-LIKD transplanted or NOT transplanted
Can you help? Deadline for study is November 1st, 2024.
Is a stipend offered? Yes
Click here to learn more and participate - krabbeconnect.org/research-studies-trials/nbs-study/
Thank you in advance to help improve #KrabbeDisease
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Sweet Ella Rose❤️