You have a chance to support countless patients around the world who are in desperate need for a treatment to be developed. In 2023 alone, we as a community raised over $100k that will go directly towards a cure! Donate today!

Donate with JustGiving


We have an unofficial community-wide Zoom call every four months! In these Zooms, we are able to relay pertinent research developments, important information about future clinical trials, and provide emotional and communal support for each other. Although there is no set schedule, it is useful to stay involved in the Facebook support group, which will announce these meetings weeks in advance to give you the opportunity to plan your attendance ahead of time!

Facebook support group

Facebook is an excellent way to connect with others and gather stories, receive advice, ask questions, and sometimes just vent!

Join our mailing list

Fill out our mailing list in order to get updates on crucial information, such as community wide Zooms, fundraising events, conferences and research forums, and most importantly, updates on our Foresee Project!