The ULF Family Conference took place on June 28-29, 2024 in Chicago. This is an important annual event where affected...
GET INVOLVED
Become a Country Ambassador
The Alliance MLC Country Ambassadors act as delegates of our organization in their own country. They connect with families affected by MLC, provide them with support and useful resources that can make their everyday lives more manageable. They help us fundraise so we can achieve our mission to accelerate research and find a treatment for MLC. If you would like to become a Country Ambassador, please get in touch with us today.
Fundraise for Alliance MLC
Fundraising is essential in everything we do. It helps us find a treatment for MLC and cure our kids and future generations.
Our current fundraising priority is raising the necessary funds for an international MLC Registry, a freely accessible database of MLC patients with important data for researchers, physicians and, ultimately, pharmaceutical companies.
Join our fundraising efforts in whichever way you are able to. You can make a donation or fundraise for Alliance MLC. Please be generous. The lives of our kids are depending on us. Here are some of the ways you can be involved and make a difference:
- Make a donation
- Ask your family and friends to make a donation
- Host a Facebook fundraiser
- Organize a walk or sports tournament
- Host an event in your city
- Enroll in Employee Matching gifts
We can help you plan and execute your fundraising ideas. Contact us and we will get started!
Make a Donation
Support Marios and MLC research
Marios is now 7 years old and, despite the best efforts of a multi-disciplinary support system his parents have put in place, MLC is steadily further compromising the quality of his life. In fact, just as this page was getting ready Marios suffered a severe head trauma that has drastically worsened his condition. We are racing against time to support MLC research that could offer him some quality of life, before it’s too late.
For the first time, there’s real scientific progress and hope in gene therapy studies for MLC—but we urgently need your help to fund the next steps so medical research can advance rapidly and give kids like Marios the future they deserve. With your support, we can better understand this rare condition, expedite the development of therapies that can delay or stop disease progression, and turn fear into hope for all children and families impacted by this severe disease.
Thank you for helping us reach our ultimate goal!
MLC Registry Support
We have partnered with KBF Canada, an international philanthropic network that brings together donors, philanthropists, and organizations that are ready to change the world. Through KBF, and in order to support the MLC Registry, we currently accept tax-deductible donations from Belgium, Canada, France, Germany, Italy, and the United States. For questions on how to make a donation, please contact Christina Marouda at christina.marouda@AllianceMLC.org.
Join us on Facebook
In 2020, we started the private Facebook group MLC Families. This is an open forum and a safe environment for families to connect with each other, share their worries, ask questions, provide advice to fellow MLC affected families, and exchange invaluable information about their MLC journey. Join this group today!
We also have an official Facebook page for our nonprofit organization. This page is accessible to everyone and you can also follow it to stay up to date with all Alliance MLC activities.
Attend an Event
Volunteer
Join our team as a volunteer offering your skills and expertise. There are many ways to be involved. You may offer a hand in our fundraising efforts, help us organize an event, amplify our outreach efforts or provide administrative help. We’d be happy to have you in our team!
WE NEED YOUR HELP
Participate in the Patients Registry.
Make a donation to help us fund this project.
If we do not do it, no one else will!