How can I learn more or join the KPTN alliance?
Please email us to join the group. Our email address is KPTNalliance@gmail.com We will reach out to you to learn more about your family and connect you with relevant information, and include you on invitations to future events.
When was the KPTN Alliance founded?
The KPTN alliance was started in 2018 by Cara Abercrombie, Dr. Emma Baple, and David Freccia. Cara and David’s daughter was diagnosed with a KPTN mutation in 2018. Cara reached out to the authors of various KPTN papers, including Emma, to learn more about the condition, and offered to meet with any other parents to share information.
The subsequent contacts led to the creation of an email list, then a small private Facebook parents’ group, and virtual meetings of our members worldwide, with research presentations by Dr. Peter Crino, Dr. Baple, and members of her research team. This website represents the next step in the KPTN alliance’s mission to share information about KPTN genetic mutations and the resulting health impacts to help improve the lives of those diagnosed with KPTN mutations.
Can I donate to the KPTN alliance?
The KPTN alliance is a small group that does not accept or solicit financial donations at this time. Our mission is to share information