Article Three in a Three Part Series on NMO/Devic’s Syndrome
By Tanya Hudson
Getting a diagnosis of a horrific and rare disease is very difficult, but one of the biggest difficulties faced by those living with something so obscure is a lack of research, knowledge and funding. In the midst of the storm sometimes someone will emerge to shed light on an otherwise unknown condition and give hope and a voice to those affected.
In the case of NMO (neuromyelitis optica or Devic’s Disease) this beacon of hope has come in the form of The Guthy-Jackson Charitable Foundation who, as their motto states, takes ‘a rare approach to a rare disease.’ Founders Victoria Jackson and Bill Guthy began the foundation in 2008 when their daughter Ali was given a diagnosis of NMO. They realized there was little to no research and funding available for this disease; they have been fighting for the cause ever since.
From the day she found out about Ali’s diagnosis, Victoria Jackson has been a powerhouse bringing groups of doctors and researchers together and accelerating the progress being made by leaps and bounds. She has hosted symposiums, given many television appearances (including Ellen), and written many books on NMO and her mission to find answers. No one can tell the story of how this mother would not and will not stop searching better than she can. Her video From Mascara to Medicine: A Mom on a Mission is Victoria’s first-hand account of how she took the news of her daughter’s NMO diagnosis and her tenacious work for the cure.
Her determination has paid off. The list of completed research funded by Guthy-Jackson includes studies with The Scripps Institute, the University of California at San Fransico, and two studies with the Mayo Clinic to only name a few . They are currently funding research with Brigham and Women’s Hospital, Johns Hopkins, The Mayo Clinic, and Standford University as well as many others. For a full list, as well as details, of the complete and ongoing research they have helped fund visit Guthy-Jackson’s funded research page. You can see the leaps which have been taken thanks to the persistence and care of this wonderful family.
The Guthy-Jackson Charitable Foundation also promotes their clinical trial registry and research funding through their program NMOtion (pronounced in motion ). Through this program patients and advocates of Devic’s Syndrome can donate, give blood for research, participate in clinical trials, and learn other ways of teaching and raising awareness of this disease.
One statement I have read on their website really stands out to me: “You or someone you love may have NMO, but NMO doesn’t have to have you or them.” So much has been accomplished in just a few short years thanks to Victoria and Bill, but there is still so much to be done. You can read the stories of NMO patients and see how this disease affects them, and there is no question about the need to get more information out there. Every new person who learns, advocates, and shares about NMO is helping to fuel research. Every donation, not just of money but of blood donations, participation in trials, and just time, helps to reach the goal of better knowledge, treatments, and hopefully one day a cure for NMO.
As I have stated before, information is the key to moving this mountain. Please take the time to read more about NMO and the information available through The Guthy-Jackson Charitable Foundation. Helping to give NMO a voice may be easier than you think.