Honoring Allie: The Impact of LovLivYoga Fundraiser on Nemaline Myopathy Research

In March 2025, Shannon Lucas hosted the 9th annual LovLivYoga fundraiser, raising $2,925 to support Foundation Building Strength and research on Nemaline Myopathy. This event carries deep personal meaning for Shannon, who started the fundraiser in memory of her daughter Allie, who passed away from this rare muscle disorder five years ago. The fundraiser not only honors Allie’s legacy but also plays a vital role in advancing research and awareness for Nemaline Myopathy.

LovLivYoga fundraiser setup.

What is Nemaline Myopathy and Why Research Matters

Nemaline Myopathy is a rare genetic disorder causing muscle weakness, affecting mobility and respiratory function, with symptoms ranging from mild to severe. Limited research funding slows treatment progress. Fundraisers like LovLivYoga support research, offering hope for better understanding, therapies, and improved quality of life for affected families.

The Story Behind LovLivYoga

Shannon Lucas created LovLivYoga to honor her daughter Allie, who battled Nemaline Myopathy until her passing five years ago. The fundraiser combines Shannon’s passion for yoga with a mission to raise awareness and funds for research.

Over nine years, LovLivYoga has grown from a small local event into a meaningful community gathering. Participants come together to practice yoga, share stories, and contribute to a cause that touches many lives. The event’s success reflects the power of personal stories to inspire action and build support.

How the Fundraiser Works

LovLivYoga is a community-focused event that invites people of all ages and skill levels to participate in yoga sessions. Donations collected during the event go directly to Foundation Building Strength, an organization dedicated to supporting research and families affected by neuromuscular diseases.

The 2025 fundraiser raised $2,925, a significant contribution that will help fund research projects and provide resources for affected families. The event also raises awareness, encouraging more people to learn about Nemaline Myopathy and the challenges faced by those living with it.

Impact of the Funds Raised

The money raised by LovLivYoga supports several key areas:

• Research Grants: Funding early-stage studies to understand Nemaline Myopathy better.

• Patient Support: Providing resources and assistance to families coping with the disease.

• Awareness Campaigns: Educating the public and healthcare providers about symptoms and treatment options.

  
  

Building a Community Through Yoga and Compassion

LovLivYoga is more than a fundraiser; it is a community builder. The event brings together people who want to make a difference, whether they have a personal connection to Nemaline Myopathy or simply want to support a worthy cause.

Yoga serves as a unifying activity that promotes wellness and mindfulness. It also symbolizes strength and resilience, qualities that resonate deeply with families affected by muscle disorders. Participants often share how the event helps them feel connected and hopeful.

How You Can Support Nemaline Myopathy Research

If you want to contribute to the fight against Nemaline Myopathy, here are some ways to get involved:

• Participate in Fundraisers: Join events like LovLivYoga or organize your own community fundraiser.

• Donate Directly: Support organizations like Foundation Building Strength that fund research and patient support.

• Spread Awareness: Share information about Nemaline Myopathy on social media or in your community.

• Volunteer: Offer your time to help organize events or assist families affected by the disease.

  
  

Every action counts and helps bring researchers closer to breakthroughs that can change lives.

Continuing Allie’s Legacy

Shannon Lucas’s annual LovLivYoga fundraiser honors Allie’s memory and inspires positive change. The event’s growth and funds raised show how personal loss can drive meaningful impact. By supporting research and fostering community, LovLivYoga offers hope to families facing Nemaline Myopathy, demonstrating that collective effort can lead to progress and healing.