Transverse Myelitis Awareness Day

Exactly what does it take for California state legislators to recognize the toll that a rare disease such as Transverse Myelitis (TM) has on it’s constituents.   It takes a dedicated California resident; Sandy Rey, a woman who poured her soul into raising awareness for a condition that she herself lives with.

A TM diagnosis is life altering to say the least.  The challenges faced by those living with  TM can be compared to living life trapped on a perpetual rollercoaster where the tumultuous ups and downs never cease.  All while your family, friends and community are helplessly planted on the ground watching you scream your way through the ride.

Sandy knew that she had to do something to make a difference so she single handedly took on this seemingly impossible mission.   Continue reading

October 2018 – Regional Rare Neuro-Immune Disorders Symposium

The Transverse Myelitis Association, in partnership with Boston Children’s Hospital Center for Pain and The Brain, is excited to host the 2018 Regional Rare Neuro-Immune Disorders Symposium (RNDS) in Boston, MA this October! The RNDS is an education and advocacy conference for families, caregivers and individuals diagnosed with Acute Disseminated Encephalomyelitis (ADEM), MOG Antibody-Associated Disease, Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (including the subtype Acute Flaccid Myelitis). Continue reading

I Am Not My Chair

Today, I was asked if I was wheelchair bound.  The question actually threw me off guard for a moment and I found myself struggling to answer the question.  I can’t quite recall my exact answer but I babbled something about being able to use my walker to walk around the house 5 or 10 percent of the time.

As the day progressed, I continued to think about that question and my discomfort with the answer I gave.  Why did I feel like a liar for telling the truth. Continue reading

Share Your Story – Inspire The World

Overcoming the obstacles that we face in life can become quite challenging  and will often make us feel as if we are running into a brick wall.  How many times have we met with adversity that seems to take us right back to square one?  How many times have we changed course or implemented a new plan to get better results only to find that we’ve just inched a few steps forward?  I’m sure you will agree that its frustrating, right.  Well, I’d like to encourage you to take the focus off of the frustration, instead I’d like you to refocus on the few inches forward that you just achieved.  Why?  Because inches add up! Continue reading

Refocused Lives are Like Open Roads, How Will You Navigate Yours

If you have ever lived in a major metropolis like Los Angeles, California then you have had to navigate your way on the very crowded highways and freeways on a daily basis.  Having once lived and worked there, I can personally tell you that a major factor in planning my day centered around traffic.  It became second nature to know when to leave from point “a” to get to point “b” and just when I thought I had it all figured out, up jumped a traffic accident and ruined all my plans.  I remember many mornings leaving extra early for work at 5:00 a.m. thinking that I would breeze into Pasadena from Santa Monica only to find that everyone else had the same intention and there I sat in traffic yet again.  This was the norm and I learned to adjust and live with it. Continue reading