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Aug. 3, 2015

TOPIC: Featured News, Advocacy

Rare Action™ Road Tour, Denver, CO

Posted by Heidi Ross

Denver, CO

Greetings from Denver,

As the road tour heads further west, the distances between stops grow longer and longer. More time in the car means less time to blog. But, 10 hours and 632 miles later I made it to Denver. It was somewhat of a tedious drive with nothing much to gaze at, however, the payoff was worth it; Denver is a beautiful city. Whenever I am outside I can not help but gaze towards the rockies ( I swear I can see peaks still capped in snow).

With time short I will get right to it. NORD has a wonderful State Ambassador here in Annie Achee. As always, I am happy to let Annie tell you her story in her own words:

“I am happy to introduce myself to the NORD community. My name is Annie Achee. I have been in the world of “rare” disease since 2011, when my husband Dr. Mitch Achee was diagnosed with Leiomyosarcoma (LMS) that year. I am thankful to say that he is currently with no evidence of disease since then. However, I continue to research daily and reach out to various sarcoma nonprofit organizations and am affiliated with four sarcoma / cancer organizations to date.

I created a website for LMS patients and caregivers, which includes a oncological research podcast as well as a nutritional YouTube presentation by a world renowned researcher, both from MD Anderson Cancer Center.

I am most honored to participate as NORD’s Colorado ambassador. I wish to promote the mission and goals of this fine organization within the state of Colorado, reaching out to rare disease nonprofit organizations to build a coalition of strength in voice and presence, joining ranks with other states throughout the USA.

My background has been working for the Federal Government for 20 years, ending my career as a Personnel Officer for the Federal Highway Administration, after adoption a baby girl in 1994. While working, I finished my Master Degree in Management and Human Relations and found this a rewarding accomplishment.

I look forward to building a sound and enthusiastic relationship with NORD and appreciate this opportunity very much.”

Annie and I are still working out which is the best contact information for her to share publicly. In the meantime, feel free to reach out to me and I will put you in contact with her. Also, at the end of my trip I will post a summary of all the Ambassadors with their most up-to-date contact info.

Next Stop: Salt Lake City

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.