Exciting things……..

First and foremost I want to wish you and yours a Happy Thanksgiving.   All of us have so much to be thankful for every day and sometimes I lose sight of how truly blessed I am. What’s the saying? Can’t see the forest for the trees……….

Over the last couple of weeks I have learned about several cool things happening for Batten Disease Awareness and fundraising that I would like to share with you.

Taylor’s Tale has launched their Miles for a Miracle program at http://www.taylorstale.org/miles.html If you like to stay in shape or know someone who bikes, runs, swims, trains, etc this is a great way to stay motivated, train for an event, or just encourage a friend by donating for each mile trained. The initial goal is $24,901 donated, the circumference of the earth in miles.

Also learned about an INCREDIBLE journey being planned beginning March of 2011. Noah Coaghlan is a friend of the Allio family in Vacaville CA. The Allio’s have two daughter’s affected by Juvenile Batten, Catie and Annie. Noah is raising awareness by running SOLO across the country from Pacific Ocean in California to the Atlantic Ocean in Florida. That’s right, coast to coast. Bookmark the website www.battenjourney.com for a map, updates and the countdown to start. His run is expected to finish up on Saturday July 9.  Please contact Noah if you know a business or corporation that would like to sponsor him.

Ourboys 5k 2011 is set for Harris Road Middle School on May 7, 2011.  I am working on finalizing the plans for chip timing and finish line management this year and have posted our logo on my facebook photo page at http://www.facebook.com/photo.php?op=1&view=global&subj=1038629719&pid=1683632&id=1386549608. A big thank you to my good friend Steve Fox for his help with this logo and other graphic design work over the years!!!! Please let myself or andy.brown@wellsfargo.com know if you have an interest in being a lead volunteer for course management, water stations, games, and/or car wash. Also, please let me know  if you,your business or corporation or anyone you know may have an interest in sponsoring our race.

More details to come about 24 hours of Loopy for Batten Awareness Weekend June 4, 2011 in downtown Davidson, NC.


I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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