Volume 8 Issue 1
Article 18
The Devics-Support Group The Devics-Support Group was launched in February of 2006 by Tim Mulvihill of Newport News, Virginia. Upon the illness of Tim’s partner, Robert Keith Burden in 2005, it was quickly discovered that information regarding this extremely rare disease and its subsequent treatment protocol was sparse. Hoping to remedy this situation, Tim created Devics-Support. Shortly after forming the group, Tim met Grace (Pamala) Mitchell through The Transverse Myelitis Association. Tim and Grace joined forces, determined to make their group a successful support and resource site. The group quickly grew into more than just a support network, drawing the attention of patients, doctors, researchers, and medical institutions from around the world. Recently our members were invited to participate in a clinical trial for Rituxan at UCSF. We were also invited to the 2007 NORDS Conference, held on September 28th through the 30th, in Rockville, Maryland. Our group has now grown to become an informative and beneficial resource for over 200 members from around the world. Currently, Devics-Support is registered with NORD and NIH, is recognized by the National MS Society, and is referenced by many of the major insurance companies as a resource. We have also been quite successful at getting some of the major internet resources to update their information regarding Devics. We work in tandem with The Transverse Myelitis Association, and members are encouraged to join the Association and to direct all donations there. Our co-director, Grace, diagnosed with Devics in 2005, is a current member of the TMIC list, and has found it to be extremely informative and supportive regarding the issue of spinal myelitis. Sandy Barry, who has been a member of our group since her diagnosis in 2006, recently coming on board as our Manager, is also a current member of the TMA. Tim, Grace, and Sandy, have been very impressed with the resources that The Transverse Myelitis Association has to offer. Please be sure to take advantage of this invaluable information. Tim, Grace, and Sandy are not strangers to the ravages of Devics-NMO. Tim’s partner, Robert Keith Burden, was stricken with total blindness almost over night, subsequently becoming paralyzed from the neck down. At this time, he has made a moderate recovery, is now walking with a cane, has recovered partial black and white vision, and continues to recuperate at home. Grace suffered paralysis twice, first becoming paralyzed from above the waist down, and within weeks of coming home from rehab, suffering another episode of paralysis which began slightly below her shoulders. She has been hospitalized many times since, with repetitive episodes of optic neuritis. She has regained mobility and currently is able to see and read with the aid of glasses. Sandy has been stricken several times with optic neuritis in both eyes and has permanently lost her vision in one eye. She continues to fight to save her remaining eye. She is a valuable asset to us, donating time and effort from her already busy schedule to our group. All three continue to do a wonderful job with Devics-Support. We encourage anyone who is affected with Devics-NMO to contact us. Our mission is to offer information for patients, caregivers and friends, addressing all with sensitivity and compassion. Visit Devic’s-Support at : http://groups.google.com/group/Devics-support Devics-Support Timothy Mulvihill Pamala (Grace) Mitchell Sandy Barry |