Krabbe disease: how to organize a fundraising campaign for the treatment of this rare disease

Crabbe's disease is a rare genetic disorder that affects the nervous system and usually manifests itself in infancy. The disease has a severe course and is characterized by a gradual loss of basic functions such as motor and cognitive skills. Treatment options are limited and require costly medical interventions and specialised care. For this reason, organising a fundraising campaign to raise funds for the treatment of this rare disease is not only an act of compassion, but also a real support for patients and their families.

What do we need to know about Krabbe disease?

Krabbe disease, also known as Globoid Cell Leukodystrophy, is a rare genetic disorder that affects the brain and spinal cord. It progressively damages myelin, the protective sheath of nerve fibres. The cause of the disease is a mutation in the gene responsible for the enzyme galactocerebrosidase (GALC). Lack of this enzyme leads to the accumulation of toxic substances in the nervous system, which causes serious neurological problems and gradually damages the nerves.

Krabbe disease is an autosomal recessive disease, which means that both parents must be carriers of the mutated gene for the child to be at risk of developing the disease.

Krabbe disease is divided into several forms according to the age of onset:

• Infantile form (manifests before 6 months of age): the most common and severe form in which symptoms progress rapidly.
• Late infantile, juvenile and adult form: manifests in later stages of life and often has a slower but still progressive course.

Crabbe's disease: symptoms and treatment options

Krabbe disease can manifest in four main forms according to the age at which symptoms begin. The most common is the infantile form, which affects infants and young children. The main symptoms include:

Early symptoms in the infantile form (usually before 6 months of age):

• Irritability and unusually loud crying.
• Cramps and increased muscle tone.
• Loss of abilities such as head retention, grasping and other motor skills.
• Loss of vision and hearing with progression to Crabbe's disease.
• Problems with swallowing and eating.

Symptoms in juvenile and adult forms:

• Coordination and balance problems leading to instability.
• Loss of fine motor skills.
• Gradual loss of vision and hearing.
• Cognitive difficulties, including problems with memory and information processing.

Treatment options

There are currently no treatments that completely cure Krabbe disease, but there are therapies that can relieve symptoms or slow progression, especially with early detection. The main therapeutic approaches include:

1. Stem cell transplant: This therapeutic method is effective if performed in the early stages of the disease, before serious damage to the myelin. Stem cells can slow disease progression by taking over the function of the missing GALC enzyme. The procedure should be performed immediately after diagnosis in at-risk patients.
2. Gene therapy: a promising approach that aims to deliver a healthy copy of the GALC gene directly into nerve cells. The method is still in the research stage, but initial results are encouraging.
3. Symptomatic treatment: Due to the lack of a complete cure, the focus is on relieving symptoms using:

• Medications for muscle spasms and pain
• Physiotherapy to maintain mobility
• Speech and occupational therapy to support communication and cognitive skills
• Psychological support for patients and families

1. Family support: patient care requires significant support. Support groups and therapy sessions can help families cope with emotional and physical challenges.

How do you organize a successful fundraising campaign to support someone with Krabbe disease?

Organizing a successful fundraising campaign for a person with Krabbe disease requires careful planning, clearly defined goals, and effective communication strategies. The campaign can be not only a source of funds for treatment, but also a way to raise public awareness of the disease.

Here are the basic steps to create a successful fundraising campaign:

• Determine the goal: Calculate the amount needed, including treatment, transportation and rehabilitation costs. Set a realistic deadline to stimulate donations as soon as possible.
• Choose a platform. Launching a campaign on this platform will make it easier for you to spread the word among donors and ensure quick fundraising.
• Create an engaging story: Present the patient's story and their struggle with the disease. Tell more about Krabbe disease and highlight the urgent need to raise funds for a cure.
• Spread the campaign through different platforms and communication channels.
• Include influencers in the campaign: Popular personalities and organisations supporting rare diseases can increase the visibility of the campaign.
• Organize events: Organize bazaars, concerts and other events or contact media for wider coverage of the campaign.
• Encourage people to share the campaign. Even small amounts of money raised by multiple people can make a significant contribution to the ultimate goal.
• Thank donors: Regularly thank donors, both publicly and privately. You can organize a "Week of Gratitude" with social media posts or sending thank you letters or videos.
• Be honest: Keep records of funds raised and spent to build trust with donors.

How to choose a successful headline for a fundraising campaign?

Choosing a successful headline for a fundraising campaign is key to attracting the attention of potential donors. The headline should be clear, emotionally charged and convey the essence of the campaign. Here are some guidelines for creating an effective headline:

1. Be clear and specific:

The headline should immediately communicate the cause and the need for support. Mention the name of the person who needs help or a brief description of the situation. If there is a specific amount or goal (e.g., for a specific treatment or therapy), you can state it.

Example.

2. Use emotional language

Emotion is a powerful motivator, so try to create a headline that will touch people's hearts. Words like "hope", "life", "save" or "support" are appropriate for fundraising campaigns related to specific health needs.

Example.

3. Avoid headlines that are too long

Use short and clear phrases. The headline should be easy to read and remember. Try to limit the headline to 8-10 words and avoid complicated phrases and terminology.

Example.

4. Express the specific objective of the campaign

If the campaign has a specific goal - transplant or rehabilitation - mentioning it can make the headline more compelling and clear.

Example: 'Let's support Ivan in his fight for a transplant and give him a chance for a new life'"

5. Inspire readers

Focus on the positive impact of donations. Rather than focusing on the severe consequences of the disease, express hope for securing a better future.

Example.

6. Use a word that prompts action

Begin with an action verb such as "support," "help," "donate" that will prompt donors to take action.

Example.

Start a campaign on PavelAndreev.ORG.

How to write an exciting text of a charity campaign for a person suffering from Krabbe disease?

Emotional and inspirational text is the heart of any successful charity campaign, especially when it comes to a rare disease like Krabbe disease. Here are a few steps to creating text that will not only inform, but also touch potential donors:

1. Start with a personal introduction and brief history: Describe the person behind the campaign - age, interests, dreams and what life was like before the disease. Tell about his struggle and how Krabbe's disease has changed his daily life.
2. Provide information about the disease in simple and understandable language: many people are not familiar with Krabbe disease, so it is important to briefly describe what the symptoms are and what the long-term consequences are. Explain what treatment is needed and how difficult it is to secure the necessary funds.
3. Focus on the specific need and the purpose of the campaign.
4. Emphasize the importance of each donation: Explain that every donation, regardless of size, contributes to the ultimate goal of the campaign.
5. End the text with a call to action: Encourage people to share the campaign even if they cannot donate financially.

Sample text of a charity campaign for a person with Krabbe disease

"Support little Alex in his fight against the rare disease Krabbe disease!"

Alex is two years old and loves to draw, listen to children's songs and play with his dog Lucky. Just a few months ago, Alex and his family's life was turned upside down. After multiple tests and medical exams, he was diagnosed with Krabbe disease. This is a rare and progressive genetic disease that gradually destroys his nervous system.

Krabbe's disease causes severe impairment of motor skills, vision, hearing and results in severe pain. Alex now has difficulty moving and communicating. Every day is filled with challenges that no young child should have to experience.

Alex's family is currently fighting to raise funds for a stem cell transplant - the only chance to slow the progression of the disease. The procedure is expensive and urgently needed as every minute lost reduces the chances of success.

We need your help! Every dollar donated will be used to cover the medical expenses, rehabilitation and specialized care that is critical for Alex. Your support can change his life and give this little boy a chance to fight Crabbe's disease.

Help us save Alex! Donate funds or share his story to help us in this uphill battle. Thank you from the bottom of our hearts for your support and for not being indifferent to the fate of Alex and his family.

How do we personalize content?

Personalizing content is a key element to creating a high-impact charity campaign. Describe the patient's personality and interests, including details about their character, hobbies and dreams. Introduce his hopes and wishes by stating what he would like to achieve if he were able to beat the disease - this helps donors see his life beyond the disease. Emphasize support from family and community, showing how important they are. Use photos or short stories - they make the text more vivid and emotional.

Sample text with personalized content:

"Let's give Ivan a chance to live - the little artist with big dreams!"

Ivan is five years old and an incredibly talented boy who loves to draw everything that surrounds him. Every morning for him starts with a new painting and lots of smiles, but in the last months his daily life has changed. Ivan has been diagnosed with Krabbe's disease, a rare and severe illness that gradually damages the nervous system.

What is Ivan's dream? He wants to become a "real artist" and dreams of seeing his drawings exhibited in an art gallery one day. However, the disease is wearing him down more and more, and treatment options are limited. However, there is hope - through a complex transplant that will give Ivan a chance to continue painting and live his childhood to the full.

Treatment is expensive, and Ivan's family is already running out of resources in their battle with the disease. Every penny, every little bit of support is a chance for Ivan to continue creating his own little world on canvas, free from pain and suffering. Your donation will be used to perform life-saving transplants, rehabilitation and purchase necessary medications.

Together we can give Ivan a chance to make his dreams come true! Even if you can't donate, you'll be helping us a lot even just by sharing his story. Thank you for believing in little Ivan's future!

How do we spread our campaign online?

Spreading your campaign online is essential for successful fundraising and community engagement. Here are a few strategies and steps you can follow to increase the visibility of your campaign:

1.Use social media: create a campaign page or post on Facebook, Instagram, X, Tiktok, YouTube and LinkedIn. Use hashtags related to the cause to reach a wider audience. Share regular updates, photos and videos to keep followers interested and engaged.

Example: Facebook post: 'Help little Ivan make his dreams come true! Every donation can change his life." #BorbaWithHisHurt #DonateHope"

2.Create an inspiring video: video can tell a patient's story in a much more emotional way. Share the video on social media and video sharing platforms like YouTube.

Example.

3.Use email marketing: create an email campaign to inform your contacts about the campaign. Share the patient's personal story, the purpose of the campaign, and a link to donate.

Example.Krabbe's disease is a big challenge for him, but with your help we can give him a chance for a cure [Campaign link]."

4.Organize an online event.

Example: "Join us on [date and time] for a livestream where we'll talk about Ivan's struggle with Krabbe disease and learn how you can help [link to register]."

5.Use fundraising platforms: Start a charity campaign on a fundraising platform like PavelAndreev.ORG. Share the link with your family, friends and acquaintances.

Example.Please visit the link and help: [link]."

How to keep in touch with donors online?

Maintaining an online relationship with donors is important to build trust and engagement. Here are a few strategies:

• Regular updates: Send emails with updates on campaign progress and tell how donations are helping.
• Thank You Messages: Send thank you emails after a donation, indicating how the donation will be used.
• Share personal stories: Use photos and videos to show the impact of donations.
• Social media: Keep engagement up, share updates and respond to comments.
• Events and webinars: Host online events where donors can ask questions.

Active engagement with donors strengthens engagement and increases the chances of future donations. Through regular updates and transparent communication with donors, you can build a supportive community around your cause.

Start a campaign through the PavelAndreev.ORG online platform

Launching a campaign through PavelAndreev.ORG is quick and easy. Simply click the "Start a Campaign" button and follow the instructions to fill in the necessary information.

1. Enter a title and a detailed campaign description.
2. Add photos that will attract the attention of potential donors.
3. Share the campaign on social media to reach more people.

Don't wait! Launch a campaign through the PavelAndreev.ORG crowdfunding platform today.