–Helen Keller
Philosophy
SLC6A1 Connect is a patient organization that was formed out of necessity – Our children are sick. Our goal is for our organization to not exist in 5 years because a cure is in place. By that time, we will have moved on to curing the next rare disease. SLC6A1’s research mindset was formed with that philosophy in mind. We are in search of novel IP solutions to advance research quickly for our inpatient patient group. We can’t give our children publications to stop seizures, help them walk, or even eat.
If you have a good idea, reach out. Email, call, or text – (anytime): Amber Freed (afreed@slc6a1connect.org) or (303) 907-8038. Rare diseases work hard but SLC6A1 Connect works harder.
Resources
Patient families can find helpful resources here on our website, including diet therapy information, videos of SLC6A1 characteristics, and information for newly diagnosed families.
Researchers can find information about working with us, our grant program, available mice, and scientist FAQs.
Support
By helping to connect SLC6A1 families, we hope to provide support for existing families and those who are newly diagnosed. You can join us on Facebook or meet Our Kids to learn about other SLC6A1 families.
Advocacy
Through our advocacy campaign, we hope to elevate awareness of SLC6A1, help facilitate the consolidation of research and treatment efforts, and promote optimization of patient outcome. An important part of this campaign has been the attendance of important events in the gene and rare disease communities, including a gene therapy panel at the National Institutes of Health, the 2018 Global Genes Rare Patient Advocacy Summit in Irvine, and the NORD Rare Summit in Washington D.C.
Fundraising
Perhaps the most important part of our mission, fundraising allows us to fund the research necessary to find a cure for SLC6A1. If you would like to make a donation, please Click Here. We encourage SLC6A1 families to join in the fundraising effort. If you have ideas or a way to help, please contact Amber Freed at 303-907-8038, or email afreed@slc6a1connect.org.