A New Adventure

I don’t know what I was expecting.  That is the problem with impulsive decisions, not a whole lot of thought goes into them.  I never sat down and pondered what my goals were for writing.  Truthfully, I had none.  I didn’t design an attractive web page or purchase my own URL.  I never debated “voice” or “tone,” and I had no predetermined or deliberate direction.  I simply wrote because it was an outlet.  I expected only my parents and family would read it along with a handful of very close friends. But instead it connected me to not only the Dystonia Medical Research Foundation but to a whole dystonia community I never knew existed. I never imagined this little hobby of mine would lead to this.

When the Dystonia Medical Research Foundation Canada called and asked me if I would be interested in joining the Board of Directors, my initial reaction was a mixture of surprise and excitement.  I was surprised because even though I had been volunteering for the foundation for a while now, I never viewed my contributions as worthy of the Board of Directors.  But the mere thought that I could be part of an organization that is doing such great work with both the dystonia and the medical communities made me beyond excited.

In the past year alone, DMRF-funded investigators identified new gene variants, gained new insights on cellular proteins that contribute to dystonia and made critical discoveries about how brain circuitry influences movement.  The DMRF is part of leading edge research and their numerous contributions to the medical community are undisputed.

However, the science is not why I am excited about joining the organization.  I am excited because of the impact the science is having on individuals.  The science is improving the quality of life of children, who like my own boys, have suffered for too long.  Today, Deep Brain Stimulation (DBS) surgery allows children with certain forms of dystonia who might otherwise face life in a wheelchair to return to the playground, pain free.  Genetic discoveries by DMRF-funded investigators ensure that children are born without one of the more severe dystonia gene mutations predominant in Jewish families. DMRF efforts toward drug discovery are revealing the possibility of an entirely new generation of therapies that will interrupt or alleviate dystonia at the cellular level. The science is showing us that a cure is not only possible, but within our reach.

I am thrilled to join the Board, because it will allow me to make a difference.  To do something. To fight back.  While the idea of helping so many families affected by dystonia is incredible, my motivations are admittedly selfish.  My primary motivation is my own children.  You see, the amazing advances we are seeing in the treatment of dystonia affect my family very little.  Our type of dystonia remains difficult to treat.  While on the one hand I am thankful to organizations like the DMRF for funding the research that led to the treatment options we currently have, there is still a lot more work to be done.  I need my boys to know that I am doing everything I possibly can to help them and to help their doctors.

Over the next year the DMRF Canada and the dystonia community have some very fun and exciting things happening across the country.  If you would like some information on how to get involved, volunteer or attend one of our events please let me know!  If you would like to donate to the foundation all you need to do is click here.  I feel honored and privileged to be on the Board of Directors for the Dystonia Medical Research Foundation Canada.  I look forward to serving not only the foundation, but also the dystonia community. Please let me know if you need any information or recourses.  I am here to help.

3 thoughts on “A New Adventure

  1. Congratulations on your appointment to the Board of Directors. I admire your efforts.
    I do not belong to any of the groups you mentioned above. I do not even remember how I found your blog. My oldest daughter is severely intellectually disabled, so her struggles are different to those of your sons. But I very much enjoy reading your writings and ‘hearing’ about the journey your family is on. One of your posts that has stuck in my mind is the one you wrote about the blind girls playing at the playground – thought provoking. Thank you for your words.

    Liked by 1 person

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