Organización destacada: Proyecto MOG
The MOG Project’s Mission
El Proyecto MOG se dedica a concienciar sobre la Enfermedad por Anticuerpos MOG (MOGAD), así como a educar a médicos, pacientes y cuidadores y también a avanzar en la investigación a través de colaboración de expertos y la recaudación de fondos para nuestra Investigación para Raros programa. Proporcionamos apoyo a la comunidad MOGAD a través de sus numerosos recursos y conexiones con otros en la Comunidad MOGAD. El Proyecto MOG ofrece una variedad de grupos de apoyo para la Comunidad MOGAD, así como varios grupos privados de apoyo en Facebook, tales como MOG Anticuerpo / Anti MOG Apoyo e Información, Grupo de Apoyo de Adultos con la Enfermedad de Anticuerpos MOG (MOGAD) Zoomy Apoyo para padres y cuidadores de niños con MOGAD.
The MOG Project: Our Story
The idea of The MOG Project was born in 2017 when Executive Director and Co-founder Julia Lefelar was diagnosed with MOG Antibody Disease (MOGAD) and discovered a significant lack of information to understand and come to terms with her future. Julia had suffered for many years with undiagnosed symptoms of MOGAD, but her most acute, repeated attacks of Optic Neuritis started in 2014. At that time, MOGAD was barely on the map and there was little information with questionable accuracy for patients, doctors, or caregivers on the disease symptoms, diagnosis, prognosis, and treatment options. The MOG Project was formally kicked off in December of 2017 when Julia, her daughter, Kristina Lefelar, Amy Ednie, and another patient made a commitment to not let other patients go through similar feelings of hopelessness caused by lack of awareness and information. This small team found others with similar stories who were also willing to join the effort and The MOG Squad was born!
Since then, The MOG Project has expanded globally and provides a place where patients, caregivers, and medical professionals can get the most up-to-date educational information and connect to others in the MOGAD Community. Through fundraising, The MOG Project has been able to advance research through expert collaboration with renown experts, provide patient perspectives to research through patient surveys, make aware and garner participation in clinical studies as well as provide research grants through the Research for Rare program. Also, the MOGAD community now has many vetted resources available, a social media presence on all major platforms for news and events, as well as a support network through the various MOGAD community connections offered. The support network includes a variety of support groups for the MOGAD Community as well as several private Facebook support groups such as MOG Antibody / Anti MOG Support and Info, Adults with MOG Antibody Disease (MOGAD) Zoom Support Group, and Support for Parents and Caregivers of Kids with MOGAD.
To Learn More About the MOG Project
Get essential information on MOGAD here, and find answers to frequently asked questions about MOGAD here.
Visite el sitio web del Proyecto MOG para:
More information on the management of the disease
Encuestas destinadas a recoger datos sobre la experiencia de los pacientes
Información sobre ensayos clínicos
Información y recursos relacionados con investigación y subvenciones
Formas de conectarse a la comunidad MOGAD comunidad
Equipamiento y merchandising que pueden ayudar a apoyar nuestra causa
Más información sobre nuestro equipoel Escuadrón MOG y nuestro Consejo Asesor Médico y Científico
Póngase en contacto con el Proyecto MOG enviando un correo electrónico a info@mogproject.org.
