For I-Cell Families
We know how difficult it can be for a family to receive the I-Cell diagnosis. We understand all the emotions you are experiencing, and hope we can help. For all families, this page will be regularly updated with new resources that we hope can provide some comfort and benefit.
I-Cell Research Update | Jan. 2022
On January 17, 2022, we invited families to participate in a Mucolipidosis II research update with Dr. Rich Steet of the Greenwood Genetic Center (Greenwood, SC) and Dr. Stuart Kornfeld of the Washington University in St. Louis School of Medicine (St. Louis, MO). Drs. Steet and Kornfeld updated us on the current state of research in their labs, with a specific focus on how research around potential ML therapies is developing, and also took time to answer specific questions.
For many families, when they receive the I-Cell diagnosis from a doctor, there is very little additional information given. For newly diagnosed families (and others), this handbook provides a brief overview of the basic biology of I-Cell, a summary of previous research, and what the future of research holds.
Mucolipidosis II Support Group
Quickly, you will find that the I-Cell family community is one of the most incredible communities you will be a part of. On Facebook, we have a support group with nearly 1,000 members from across the globe. This is a place to ask questions, share stories, or just have a place to post photos and videos of your kiddo.
To join this private group, on Facebook, search for "Support Group for I-Cell Disease / Mucolipidosis II."