Théoma Seconde Vie
Providing Hope, Funding Research, and Supporting Families
Our Mission
Théoma Seconde Vie is a nonprofit organization committed to making a difference in the lives of families affected by metachromatic leukodystrophy (MLD), a rare and terminal genetic disorder. With an average life expectancy of only five years for children diagnosed with symptomatic MLD, we focus on both funding vital medical research and providing direct support to affected families.
Our mission is to advance the understanding of MLD, bring hope to those facing this devastating condition, and ensure that families do not have to face this battle alone. Through research funding, advocacy, and community support, we aim to improve the quality of life for MLD patients and work toward innovative treatments that can ultimately save lives.
What We Do
At Théoma Seconde Vie, we are dedicated to improving the lives of individuals affected by MLD through the following actions:
1. Funding Critical Medical Research
We actively fund medical research aimed at understanding metachromatic leukodystrophy and developing potential treatments. By collaborating with scientists, researchers, and healthcare professionals, we work to make breakthroughs that can change the course of this disease and offer hope for a brighter future.
2. Offering Support to Families
The diagnosis of MLD can be overwhelming, and the emotional and financial burden on families is immense. Our association offers financial assistance for medical care, therapies, and equipment, helping families navigate the challenges of daily life with an MLD diagnosis. We also provide emotional and logistical support, offering a network of resources and care to help families cope during this difficult time.
3. Raising Awareness
Through public education campaigns, fundraising events, and outreach efforts, we raise awareness about MLD and its impact. We aim to increase understanding of this rare disease, its symptoms, and the urgent need for research and treatment options.
4. Advocating for Change
Théoma Seconde Vie works to advocate for improved healthcare policies and greater funding for rare diseases like MLD. We actively engage with policymakers and healthcare providers to ensure that children and families have access to the care and support they need.
Volunteer Opportunities
We welcome individuals who are passionate about making a real difference in the lives of children and families impacted by MLD. Whether you are interested in supporting fundraising efforts, assisting with event planning, or offering your skills in administration, your help can have a lasting impact.
How You Can Help
- Event Coordination: Assist in organizing fundraising events and awareness campaigns.
- Family Support: Provide guidance and support to families in need of resources.
- Professional Expertise: Offer your knowledge and skills, such as in health care, administration, or marketing.
- Public Outreach: Help us spread the word about MLD through social media, communications, and community outreach.
Every volunteer helps us reach more families, raise more funds, and bring more awareness to this important cause.
Board Members & Team
Our team is composed of dedicated professionals and passionate volunteers who are committed to the mission of Théoma Seconde Vie. Our board members, who bring a diverse range of experience in healthcare, nonprofit management, research, and family advocacy, lead the organization with compassion and dedication. Together with our committed staff and volunteers, we work to ensure that every action we take moves us closer to a future where MLD no longer claims young lives.
Success Stories
We are proud of the progress we’ve made and the families we’ve helped. Thanks to the generosity of our donors and supporters, we’ve been able to:
- Fund cutting-edge research that has advanced the understanding of MLD.
- Provide financial assistance to families facing the high costs of medical care and therapies.
- Offer support to families, allowing them to better cope with the challenges of living with MLD.
Through these efforts, we’ve seen the difference that community support, research, and hope can make. The lives we’ve touched are a testament to the power of collaboration in the fight against MLD.
Why Your Support Matters
Time is critical. Every day counts for children with symptomatic MLD, and every donation, act of kindness, or volunteer effort helps make a difference.
By supporting Théoma Seconde Vie, you are:
- Funding life-saving research that brings us closer to treatments and a potential cure.
- Supporting families who are facing an incredibly difficult and emotional journey.
- Raising awareness about MLD, ensuring that more people know about this devastating disease and its impact.
Your contribution—whether it’s a financial donation, your time as a volunteer, or simply spreading the word—makes a world of difference for those affected by MLD. Together, we can bring hope and change lives.
Get Involved
There are many ways you can contribute to the work we do at Théoma Seconde Vie. Every act of kindness, whether large or small, makes a powerful impact.
Ways to Get Involved
- Donate – Your donation directly funds research, family support, and awareness efforts.
- Volunteer – Use your time and skills to support our events and programs.
- Advocate – Help raise awareness and push for policies that benefit children with MLD.
- Organize Fundraising Activities – Host your own events or campaigns to raise funds for MLD research and family aid.
