Moose is the most special little boy, and we would all be lost without him.
A few years ago I was struggling with watching my beautiful grandson, Moose, suffer with this terrible, incurable disease (cystinosis). It was so hard to know that there was NOTHING that could be done other than treat the symptoms and do our best to keep him going day to day. His mommy, Larissa, knows his schedule, his meds, his appointments, etc. like the back of her hand. She is amazing. These kiddos are warriors…but my goodness, their parents are just as incredible! So, as a grandparent, I was just feeling helpless.
Then I realized, we are NOT helpless. We gathered our thoughts and created the Miles For Moose 5.7 mile fundraiser. We will walk or run the 5.7 miles to honor Cystinosis Awareness Day (May 7) and the most common cystinosis mutation: 57-kb deletion.
Every time we hear of another loss in the cystinosis community, our hearts just ache for those families. They ache for us too. We may not all know each other personally, but we are all connected.
-Andrea Carr, Moose’s Nana
Please help us reach the $5,700 goal by registering April 4th – May 14th. If you are not local, we encourage you to get out and walk a collective 5.7 miles during the month of May. Going virtual allows participation from around the world! Contact Andrea with questions at email@example.com and follow us on Facebook for raffle and other exciting announcements! facebook.com/milesformoose57.
If you’d like to donate but don’t want to register – you can contribute here.
Thank you for your support!
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