November 28, 2023
What is Giving Tuesday?
Giving Tuesday is a global day of charitable giving and philanthropy that follows the Thanksgiving holiday weekend. It was created to encourage people around the world to dedicate a day to giving back to their communities and supporting various causes. The main idea behind Giving Tuesday is to counterbalance the consumerism of events like Black Friday and Cyber Monday with a day focused on acts of kindness, generosity, and charity.
Why should I Donate to KrabbeConnect?
Krabbe disease is a rare and degenerative genetic disorder that is primarily diagnosed in children under the age of 2, but a Krabbe disease diagnosis can occur anytime between 1 week and 70 years of age. The standard treatment of care is a stem cell or cord blood transplantSee Umbilical Cord Blood Transplant (UCBT). to slow the progression of the disease. However, a transplant is not a cure, and individuals impacted by this disease are often diagnosed too late to undergo a transplant. To help you better understand the impact of this disease, we’ve outlined a few aspects of daily life that individuals with Krabbe disease find challenging:
- Mobility: Krabbe disease leads to muscle weakness, spasticityA term that describes muscles that are continually contracted and often described by patients as stiff and tight muscles. This stiffness and tightness can interfere with many activities of daily livin, and difficulties with balance and coordination. Many individuals lose the ability to walk, climb stairs, crawl, and grasp objects.
- Communication: Individuals with Krabbe disease experience speech difficulties, making it challenging to communicate effectively. For the infantile form, many children are nonverbal.
- Daily living tasks: Simple daily activities like eating, dressing, bathing, and using the restroom are lost due to the disease progressing. Many individuals with Krabbe disease will require extensive assistance with these tasks.
- Pain and discomfort: Krabbe disease can cause pain and discomfort due to muscle stiffness, joint problems, seizures, and other physical issues. Managing and alleviating pain is an ongoing challenge.
- Caregiver support: Many individuals with Krabbe disease require lifelong care and support from family members, friends, or professional caregivers. Caregivers play a crucial role in helping with daily activities and medical needs.
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Our Ask:
If you decide to give to #krabbeconnect. No matter how big or small your donation is, we encourage you to download the attached image and share this image on your social media platforms. This will help encourage others to support the fight to #curekrabbe. We would love it if you used one or more of the following hashtags when posting the image: #krabbeconnect #givingtuesday #curekrabbe #ilovesomeonewithkrabbe
To download the image, drag it to your desktop or right-click the image and save it to your computer.