Fight ALS.

Hello friends and family:

It's that time of year again. On Saturday, September 24th we are participating in the 18th 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 8 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 walking at all any longer.  He still pulls himself up our stairs every night to go to bed with his upper body strength. That will be changing soon in the next month or so given further difficulties but you all know he will do it until the last possible moment.  His home health care worker is back with us now three days a week when Miles gets general care as well as intensive body work.  He has massage therapy weekly as well.  Clio is also still with us 5-6 days a week and he acts as Miles right hand man.

Miles verbal skills have continued to decline so no phone calls for him.  He can still make himself understood though given a willing listener and he can use text to talk on his phone when needed. Those of us who are around him most can understand what he wants to communicate, and we can translate for the rest.  If you can't understand Miles just let him know and he will find another way to make himself heard. 

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. 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 $110,000 for the ride/walk 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