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Information related to #PowerOfRare

THE POWER OF RARE: BLUEPRINT FOR A MEDICAL REVOLUTION by Victoria Jackson with Dr. Michael Yeaman is available https://guthyjacksonfoundation.org/recommended-reading/the-power-of-rare and all proceeds benefit guthyjacksonfdn! #dogsofguthyjackson #powerofrare

30 0 Oct 4, 2018

A productive day at the universityofutah Data Coordinating Center (DCC) with Dr. Larry Cook, Anna Marie Jolley and philanthropyccc. Thanks to a major, multi-year grant from guthyjacksonfdn, the DCC maintains a functional infrastructure for the world's most comprehensive NMO patient registry. #NMOcure #powerofrare #guthyjackson

28 2 Sep 13, 2018

National Rare Disease Day!! It’s so important to have people support you no matter what. Whether If you laugh together or cry together! I pray one day there will be a cure but in the mean time I will keep fighting! #powerofrare #NMO #neuromyelitisoptica #fighter #empowerment #rare #findacure

50 3 Mar 1, 2018

I get this question often and its the weirdest question for me to answer especially when people with the same autoimmune disease ask. For me its only weird because "normal" is hard to determine. What used to be my normal may be different from what someone elses idea of normal was before there disability came forth to light. Honestly it affects everyone diffrently. Now personally I just make small adjustments to what used to be MY normal, even when I was in the middle of a relapse. Do I still have to do things a little bit different yes, do I have to pay attention to my body more carefully yes. But it doesn't stop me from continuing my life or stop me from living my best life possible. I truly believe if anyone has the drive to do it, its possible! I deeply believe our limits are only powered by our imaginations! #thoughts #motivation #raredisease #autoimmunedisease #nmo #Neuromyelitisoptica #nmofighter #MS #multiplesclerosis #powerofrare #mindset #questions #normal #livingmybestlife #disablity #change #spoonie

44 9 Jul 27, 2018

On Rare Disease Day we champion and applaud all those battling a rare disease! We see you, and we will continue to fight for you! Neuromyelitis Optica (NMO) is an autoimmune disease of the nervous system. The immune system attacks components of the central nervous system, and blindness and/or paralysis may occur. NMO can be difficult to diagnose, and is sometimes mistaken for multiple sclerosis. This rare disease causes many issues in a person’s life. There is no cure, but treatments are currently in clinical trials. If we can uncover the secrets behind NMO, we can better understand other autoimmune diseases! We at CBJF fight for you all!! #PowerOfRare #RareDiseaseDay #NMO #Devics #autoimmune #chronicillness

38 0 Mar 1, 2018

SAVE THE DATES! https://guthyjacksonfoundation.org/events/2019-nmo-roundtable-conference-and-patient-day/ guthyjacksonfdn luskinconferencecenter ucla #philanthropy #medicalresearch #NMO #powerofrare #losangeles

50 2 Sep 19, 2018
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