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Jul. 30, 2015

TOPIC: Featured News, Advocacy

Rare Action™ Road Tour, Oklahoma City, OK

Posted by Heidi Ross

Oklahoma City, OK

Greetings from Oklahoma,

The awesome folks in the NORD marketing department created the snazzy logo and imagery that you see above (and in all previous posts). Driving through Oklahoma today, it felt like I was on that very road. Absolute nothingness for miles in every direction.

So far the trip has covered about 3,000 miles, with about another 1,000 miles of driving to go.


Tim's road trip so far

Tim’s road trip so far


Here in Oklahoma, I was not only exited to meet our State Ambassador, Rachel Daniels, but we had our first groupie! Rare advocate Tracy Lundy read the blog and reached out to meet up and talk shop in Oklahoma City. Tracy has a wealth of medical nutrition experience in government and the private sector and is excited to support NORD’s advocacy in any way she can. With Rachel Daniels already on board, we now have a growing grassroots coalition in Oklahoma.

Here’s the scoop on Rachel, in her own words:

“I am a devoted mother of 5 beautiful children.  The youngest of whom in May of 2014 was diagnosed as having a very rare condition called Congenital Generalized Lipodystrophy.  With a degree in Law and Business, I knew that my education would be an invaluable resource one day.  Public speaking and writing became a passion for me.  It really came to bare when I began  challenging the textbook outcome of my daughter’s condition with determination to be a voice that is heard.  I’ve had the opportunity to speak at the Lipodystrophy Symposium in Ann Arbor Michigan last year as well the Oklahoma State Capital for Rare Disease Day 2015.  Both me and my daughter are featured in Noah Coughlan’s Documentary “Run For Rare” coming out in 2016.

Tracy (left) and Rachel

Tracy (left) and Rachel

I currently advocate for my daughter and the rare disease community as a whole in efforts to raise awareness and build friendships that last a lifetime.”

You can reach out to Rachel at (405) 623-2753.

Next stop (actually I arrived today – time travel!): Denver, CO

Join the road trip on twitter with #RareAction

Want to learn more about the Rare Action Network™ and how you can join?  Visit us on our website here.

About Tim Boyd

Tim is NORD’s Associate Director of State Policy. He lives and works in Washington, D.C. Feel free to reach out to Tim at [email protected] or at (202) 545-3830.