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.
http://www.myelitis.org/newsletters/newsletter8-1-toc.htm
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