[Nfbf-l] Fwd: Own the Equinox for Usher Syndrome Awareness Day

[Darlene Laibl-Crowe]

WooHoo!
 
There is now have an awareness day!  See below – it’s in September!   For those who do not know, Usher Syndrome affects more than half of the deafblind population.  
 
Be sure to mark you calendar and spread the word!
 
:) (smile)
Darlene
Begin forwarded message:
From: "Usher Syndrome Coalition" <k.vasi at usher-syndrome.org <mailto:k.vasi at usher-syndrome.org> >
Date: August 3, 2015 at 11:28:09 AM CDT
To: "Susan Herring" <sherring50 at aol.com <mailto:sherring50 at aol.com> >
Subject: Own the Equinox for Usher Syndrome Awareness Day







HELP US OWN THE EQUINOX FOR USH AWARENESS
Usher Syndrome Awareness Day | Saturday, September 19



We said we need an Usher syndrome Awareness Day and we got one! Thanks to the efforts of Senator Wyden and his staff, the third Saturday in September as "Usher Syndrome Awareness Day" was  <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513033&Href=https%3A%2F%2Fwww.congress.gov%2Fcongressional-record%2F2015%2F07%2F29%2Fsenate-section%2Farticle%2FS6128-2> entered into the Congressional Record. 
Now that we have the support of the United States Congress, we need to make the most of it.
The autumnal equinox is the day when daylight and darkness hang in perfect balance, the moment before those in the northern hemisphere slip into darker days. It is a powerful metaphor for the threat of Usher syndrome and the state of Usher syndrome research. We have the power, today, to stop our world from sliding into darkness.
We want to  <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513034&Href=https%3A%2F%2Fusher-syndromeorg.presencehost.net%2Fequinox%2Fown-the-equinox.html%23register> Own the Equinox, claiming the third Saturday in September each year as Usher Syndrome Awareness Day. This global event will start on one side of the world (we're looking at you, Australia) and run around the globe to the farthest point before the International Date Line (that’s your cue, Alaska).




	


HOW YOU CAN COMMIT TO OWNING THE EQUINOX
Bucket 1: Just a mile a day!
Run or walk the Own the Equinox Mile-a-thon in your hometown.
While a marathon is 26.2 miles run in succession, you can run or walk the mile-a-thon over 26 days. Starting August 25th, pop outside your house or hop on the treadmill at the gym, and walk or run at least one mile every day. You will have covered at least 25 miles in the 25 days leading up to Usher Syndrome Awareness Day on September 19th, when you join the USH family for a brisk 1.2 miles! Kids can do it, too!
 <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513034&Href=https%3A%2F%2Fusher-syndromeorg.presencehost.net%2Fequinox%2Fown-the-equinox.html%23register> Sign up here.
Bucket 2: Can you go the distance?
Run the official Equinox Marathon in Fairbanks, Alaska.
Up for an even bigger challenge? On September 19th,  <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513035&Href=http%3A%2F%2Fbit.ly%2Fusheqxmarathon> run the official Equinox Marathon in Fairbanks, Alaska with Mark Dunning, Caroline Brown, and others.
 <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513034&Href=https%3A%2F%2Fusher-syndromeorg.presencehost.net%2Fequinox%2Fown-the-equinox.html%23register> Sign up here.
Bucket 3: Create your own 'a-thon'
Not a runner? Not a problem.
Start your own spin-a-thon, yoga-thon, bake-a-thon...Starting August 25th, share what you're doing to Own the Equinox for the next 25 days. Then join us in spirit for the big day on September 19th.
 <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513034&Href=https%3A%2F%2Fusher-syndromeorg.presencehost.net%2Fequinox%2Fown-the-equinox.html%23register> Sign up here.

	


RECENT USHER SYNDROME BLOG POSTS
 <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513036&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fown-the-equinox-dont-let-the-sun-go-down-on-ush.html> Own the Equinox: Don't Let the Sun Go Down on USH | August 3, 2015 by Mark Dunning
We need to cure the most common cause of combined deafness and blindness. And we can do it. On September 19th, Usher Syndrome Awareness Day, let’s demonstrate our power to make the impossible possible.  <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513036&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fown-the-equinox-dont-let-the-sun-go-down-on-ush.html> Read more...
 <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513037&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fown-the-equinox-usher-syndrome-awareness-day.html> Own the Equinox: Usher Syndrome Awareness Day | July 20, 2015 by Mark Dunning
On September 19th, we want to Own the Equinox. We need a global Usher Syndrome Awareness Day and we're going to have one.  <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513037&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fown-the-equinox-usher-syndrome-awareness-day.html> Read more...
 <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513038&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fgene-editing-primer-the-how-the-if-and-the-when.html> Gene Editing Primer: The 'How', the 'If' and the 'When' | July 16, 2015 by Jennifer Phillips, PhD
What is CRISPR/Cas and why is everyone so excited about it?  <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513038&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fgene-editing-primer-the-how-the-if-and-the-when.html> Read more...
 <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513039&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fush-blog.html> CLICK HERE TO READ OLDER USH BLOG POSTS



QUESTIONS?
Contact us at +1-978-637-2625 or email Mark Dunning at  <mailto:m.dunning at lek.com> m.dunning at lek.com.





Our Contact Information
Usher Syndrome Coalition 
2 Clock Tower Place, Suite 418
Maynard, MA 01754
1-978-637-2625
 <https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/17942/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513040&Href=http%3A%2F%2Fusher-syndrome.org%2F> http://usher-syndrome.org/

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