Unfortunately, this is not my first tour of Light House Park walking for ALS. I walked for my co-worker and friend, Amanda Pumm Bernier, ~2013-2017, but this time it for my wife of 25 years, Rose Spielman. Unlike Amanda who had familial ALS, Rose did not have the genetic markers for ALS. Rose, like 90% of those diagnosed with ALS, do not find out that they have ALS by a genetic test. It took about a year for us to exhaust all the potential autoimmune and related diseases, before the ALS diagnosis was made. We had teams in Boston and New Haven trying to diagnose her and granted some of her symptoms and tests did not align with an ALS diagnosis at first. But by last fall, when it had been determined that all the autoimmune treatments had performed as they should without effect, Rose was diagnosed.

For Rose it has been devastatingly painful. While she first lost her ability to walk, losing her ability to speak has been unimaginably frustrating.  Rose, as many of you know, is very social and now she relies almost solely on an eye gaze device (TobiiDynavox) to make her thoughts known letter by letter, word by word. Still Rose completed her second textbook this summer through Wisewire/openstax. Her first, Introduction to Psychology, has been used by more than 500,000 students!  While the rest of her body deteriorates, her mind remains unchanged. Now she needs assistance for every physical action she needs, every scratch that needs itched, every position that is uncomfortable moved.

Rose’s breathing efficiency is down to ~20% of normal and she may not have long left with us, but she wants you to join us. Either by physically joining the team and walking with us on October 6 in New Haven, or by donating to a team member.

Thank you for your consideration,

Tim