On Saturday, September 18th we are participating in the 17th Annual Napa Valley Event to Defeat ALS. We will be raising funds for the ALS Association, which provides care services; funds global, cutting-edge research; and supports important public policy initiatives.
As most of you know, Miles was diagnosed with a slow progression type of ALS 7 years ago. He is still doing well given his condition, but progression has slowed Miles a bit more this year, as with every year. He is not really walking at all any longer though he can pull himself up our stairs every night with his upper body strength. He is now back to having body work which he did not have during the pandemic but his home health care provider has not been able to come back just yet. That is a noticable loss to us but there are others who need full time care giving and we can be thankful that Miles is not in that boat to date.
Miles verbal skills have declined so no long phone calls for him. He can still make himself understood though given a willing listener. He prefers taking his time to talk or text instead of talk apps. Luckily, the ‘talk machine’ is there if he needs it and it often comes in handy. Those of us who are around him most can understand what he wants to communicate, and we can also translate for the rest.
At home Miles is remarkably busy in his ‘shop’. He can be in the shop for hours every day, keeping himself active and engaged.
Now for the ride…We'd love to have you part of team (S)Miles if possible, this year. This team is such a boost for all of the McConnell/Breens and we love everyone who has joined with us. If you cannot be with us on ride day you can still be a part of the team and help to fund raise. If you cannot be part of the team but you would like to support me and Miles, you can donate below. Raising awareness of the urgency to find treatments and a cure is our goal. We know that you all have different goals and different charities you want to support. With the pandemic and other financial concerns associated with it we understand if your goals this year go beyond Team (s)Miles. There is never any pressure to donate or ride. This fund raiser is only if you are willing and able.
We are happy to report that Last year Team (s)Miles raised over $100,000 for the bike ride and we hope to do it again. All your support means so much to Miles, Spence, Jay and me and you are all so appreciated.
We send you love and (s)Miles,
Dubie, Miles, Spencer and Jay