Macie's Mission

by Macie Steele

Supporting: Love Some1 with Glut1 2020 for Glut1 Deficiency Foundation



We thank everyone who has supported Macie and our family over the years.  You've helped make a lot of good things happen for our entire community, and we have many reasons to be excited and hopeful for what the future may hold.

The Glut1 Deficiency Foundation has recently been selected as one of 30 patient-led rare disease organizations to be part of the Chan Zuckerberg Initiative Rare As One Network, which will provide training, technology, tools, mentorship, and funding to help establish a collaborative research network.  This is truly an amazing opportunity for the entire Glut1 Deficiency community and could not have been possible without the help of those who have directly supported the Foundation's mission and have helped lead us to this exciting milestone. The investments we've been able to make in building our resources and programs, the learning and training we've been able to do, the research grants we've been able to award, and the relationships we've been able to develop with our researchers and clinicians have all been essential ingredients to making this incredible honor a reality.   

The grant will allow us to continue learning, growing, and building relationships as we work to bring all stakeholders in the community together to create a framework for identifying needs, setting priorities, and creating a strategic research plan. With the assistance we will receive through the Rare As One Network, there is potential to dramatically change the future for our patients.  

We hope you'll join us on this exciting journey and continue to support the mission of the Glut1 Deficiency Foundation so we may be able to put these plans into action and move closer to a cure for all our loved ones.


The Love Some1 with Glut1 annual campaign is the signature awareness and fundraising event for the Glut1 Deficiency Foundation, running from February 14-29, Valentine's Day through Rare Disease Day. It is an important opportunity to educate others and raise much-needed funds to help better serve the needs of our patient community through our mission programs for increased awareness, improved education, advocacy for patients and families, and support and funding for research.

Thank you for helping us reach our goal and supporting us as we continue our work to bring help and hope to everyone, everywhere, who is affected by Glut1.  You make our mission possible.

learn more about love

messages from the heart of our community

learn more about Glut1 Deficiency

our new video to help raise awareness and improve education

please visit our website for more information

How would you like to support?