Empower Your Impact: Finding Purpose in ALS Fundraising Efforts

Turning Grief into Action: A Mother and Daughter’s Fight Against ALS

By Archyde News Staff | March 22, 2025

After losing her husband, Craig, to ALS in 2022, a woman and her stepdaughter channel thier grief into fundraising and awareness, offering a beacon of hope and a practical roadmap for others facing similar loss.Their efforts highlight the power of community and the importance of continued research into this devastating disease.

The Spark of an Idea: Crafting Hope

Losing a loved one is an experience that profoundly reshapes life’s landscape. Coping with such a loss frequently enough involves finding ways to navigate the “new normal,” and for many,this path includes honoring the memory of the deceased. Following Craig’s death in 2022 from Amyotrophic Lateral Sclerosis (ALS), Anita and her stepdaughter, Georgia, chose to honor him by taking action. Their journey began unexpectedly at a Christmas craft fair.

Inspired by the creativity and community spirit around them, the pair decided to create their own crafts to raise money for ALS research. “We were so fired up after the outing,” Anita recalled, “that we instantly started planning and throwing ideas around. We couldn’t wait to get started. We decided to make Christmas decorations as we both liked them and thought they’d sell well.”

Their initial efforts weren’t without challenges. “We faltered a bit at the beginning as we tried making things that weren’t very good,” Anita admitted. However,with perseverance,they honed their skills and began producing items they were confident others would buy.Word of their efforts spread, and friends offered to contribute, turning their personal project into a community endeavor.

From Craft Fairs to Fundraising: A Community United

The pair participated in two Christmas markets in November and December of 2024, transforming their craft stall into a beacon of awareness. Wearing Motor neurone Disease Association (MNDA) T-shirts (the UK equivalent of the ALS Association), displaying banners, and sharing literature alongside a photograph of Craig, they made it clear what they were supporting. They also put out a collection box for donations.

Their efforts proved prosperous. They raised £850 ($1,100) in sales and donations during the two events. Just as importantly, they were able to raise awareness by speaking directly to people and engaging them about what ALS is. What originally started as a way to remember Craig, had blossomed into a way to educate people about the disease and maybe inspire them to get involved to support people struggling with ALS. They are currently preparing for more craft fairs this November and December 2025.

This grassroots fundraising effort highlights the power of community involvement in combating ALS. Similar initiatives are common across the U.S.,with local chapters of the ALS Association organizing walks,runs,and galas to raise funds for research and patient support. For example,the annual “Walk to Defeat ALS” events across the country draw thousands of participants each year.

“The Under Tree Folk”: A Novel Approach to Coping and Fundraising

Beyond craft fairs, Anita found another powerful way to channel her grief and contribute to the cause: writing. She wrote a book called “The Under Tree Folk.” The story emerged after Craig’s passing, when she struggled to find a sense of purpose. “It came about as when Craig died after two years of illness, I struggled to find a purpose,” Anita shared. “I missed his presence in many ways but especially when I was upset.He used to tell me stories at night when I couldn’t sleep.Without him there, I was forced to tell myself stories.”

The book became a form of therapy, allowing her to process her emotions and keep Craig’s memory alive. “Writing is like therapy for me,” she explained. “It’s all-consuming and helps me manage my grief. The fantasy world I created allows me to be somewhere else where life is simple,uncomplicated,and untouched by Craig’s death.“

Anita hopes the book,the first in a series,will provide enjoyment to readers while raising money for ALS research and support programs. She also hopes it “will keep ALS in the spotlight so that more people will participate in fundraising events.“

Understanding ALS: A Closer Look

Amyotrophic Lateral Sclerosis (ALS), often referred to as Lou Gehrig’s disease in the U.S., is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.As the disease progresses, people lose the ability to control muscle movement, which eventually leads to paralysis and respiratory failure.

While the exact cause of ALS is unknown in most cases, research suggests a combination of genetic and environmental factors may play a role.according to the ALS Association,approximately 5,000 people in the U.S. are diagnosed with ALS each year.The average life expectancy after diagnosis is two to five years.

Recent advancements in ALS research offer some hope. Scientists are exploring various potential treatments, including gene therapies, stem cell therapies, and drugs that target specific disease mechanisms. These efforts are crucial for improving the quality of life and extending the lifespan of individuals living with ALS.

ALS Facts at a Glance	Key Information
What is ALS?	Progressive neurodegenerative disease affecting motor neurons.
Common name (USA)	Lou Gehrig’s Disease
Annual U.S. Diagnoses	Approximately 5,000
Average Life Expectancy Post-Diagnosis	2-5 years
Key Research Areas	Gene therapies,stem cell therapies,drug development

Practical Steps for Supporting the Fight Against ALS

Anita and Georgia’s story serves as a powerful example of how individuals can make a difference in the fight against ALS. Here are some practical steps you can take to support this crucial cause:

• Donate to ALS Research and Support Organizations: Organizations like the ALS Association and I AM ALS provide critical funding for research,patient care,and advocacy efforts.
• Participate in Fundraising Events: Join local “Walk to Defeat ALS” events or organize your own fundraising活动.
• Volunteer Your Time: Offer your skills and expertise to ALS organizations, providing support to patients and their families.
• Raise Awareness: Share information about ALS on social media and in your community to educate others about the disease.
• Advocate for Policy Change: Contact your elected officials and urge them to support legislation that promotes ALS research and access to care.

Addressing Counterarguments: Why Individual efforts Matter

Some may argue that individual fundraising efforts have a limited impact on a disease as complex as ALS. while it’s true that large-scale research initiatives require significant funding, it’s important to recognise the cumulative effect of individual contributions. Every dollar raised, every hour volunteered, and every conversation started helps to advance research, improve patient care, and raise awareness about ALS.

Furthermore, individual involvement fosters a sense of community and hope, which can be invaluable for those affected by the disease. Knowing that others care and are willing to support the cause can provide much-needed emotional support and encouragement.

Conclusion: A Legacy of Hope

Anita and Georgia’s journey is a testament to the resilience of the human spirit and the power of collective action. By turning their grief into action, they have not only honored Craig’s memory but have also contributed to the fight against ALS. Their efforts serve as an inspiration to others facing similar challenges, demonstrating that even small acts of kindness and generosity can make a significant difference.

Georgia and I will continue to do our part,” anita stated. “If you’re thinking about fundraising for a good cause, any effort helps, weather it’s large or small.“

what are some examples of innovative fundraising methods for ALS besides craft fairs and book writing that individuals or communities can implement?

Interview: Turning Grief into Action with Dr. Evelyn Hayes, ALS Advocate

Introduction

Archyde News: Welcome, Dr. Hayes. Thank you for joining us today. It’s an honor to have you shed light on such a critical issue as Amyotrophic Lateral Sclerosis (ALS).

Dr. Hayes: Thank you for having me. It’s crucial to keep the conversation around ALS ongoing.

The Power of Community Fundraising for ALS

Archyde News: Your long-standing work in ALS awareness is truly commendable. We were notably moved by the story of Anita and Georgia, highlighted in our recent article, and their craft-based fundraising. What’s your viewpoint on the effectiveness of these community-driven initiatives?

Dr. Hayes: Community fundraising, like the craft fairs described, is incredibly impactful. Every dollar raised directly contributes to research, patient care, and support services for those affected.These efforts also generate crucial awareness, educating people about the disease and fostering a sense of community that’s vital for patients and families facing ALS. It’s also fantastic to see how individuals are turning personal grief into powerful action.

Beyond Craft Fairs: Diversifying Fundraising Methods

Archyde News: It’s inspiring that Anita also found solace and a new avenue for fundraising through writing her book, “The Under Tree Folk.” What other innovative fundraising methods have you seen be accomplished?

Dr. Hayes: There are many creative ways to raise money for ALS research and patient support. One particularly effective area is leveraging online platforms for awareness campaigns and crowdfunding.We see several impactful events, marathons, themed galas – even online gaming tournaments raising significant funds. Every initiative, no matter how small, boosts the cause.

The Impact of Research and Awareness

Archyde News: In your experience, what impact does increased awareness and the funds raised through community efforts have on overall research and patient care?

Dr. Hayes: Raising awareness is pivotal. More awareness leads to early detection, which is hugely crucial for treatment and improving quality of life. It also leads to more people participating in the fundraising. Funds are allocated to research exploring new treatments like gene therapies, stem cell therapies, and drug advancement. They are also vitally critically important for providing support services and the necessary equipment to those living with ALS.

encouragement and a Call to Action

Archyde News: What message would you like to share with our readers, especially those who may be considering getting involved or supporting the cause?

Dr. Hayes: My message is simple: every contribution counts! Donate to the ALS association or I AM ALS, participate in events like the Walk to Defeat ALS, volunteer your time, and spread awareness by sharing data. No effort is too small. If you are currently supporting someone with ALS,know that you are not alone. This is a community effort.

Addressing Skepticism and Fostering Hope

Archyde News: Some might think, that individual efforts are not enough against such a complex disease like ALS. How do you address this skepticism and maintain hope?

Dr. Hayes: It is true that large-scale research requires immense funding, but individual actions create invaluable change.They foster hope and a sense of community that can provide invaluable mental and emotional support. Seeing people come together to support the ALS community is incredibly powerful. Progress can be made one step at a time. We are constantly working toward treatments and a cure.

Concluding Thoughts and Audience Engagement

Archyde News: Thank you so much, Dr. Hayes, for sharing your insights and passion. To our readers: what are your thoughts on how communities can better support ALS research and those affected by the disease? Share your ideas and experiences in the comments below.

Dr. Hayes: Thank you for having me. I look forward to hearing from your readers.