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Jul. 28, 2015

TOPIC: Advocacy, Featured News

Rare Action™ Road Tour, Tallahassee, FL

Posted by Tim Boyd

Tallahassee, FL Blog

Greetings from Tallahassee,

As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules prevented our advocate and me from posting a few days ago).

I like Tallahassee, it is one of few state capitals with the vibe of a coastal city. This can get confusing, however, as the city center is about 30 miles from the coast. No matter, when is Florida do as the Floridians do…

 

Palm trees right in front of the capitol building!

Palm trees right in front of the capitol building!

Now that I’m here (time travel is great), I’m delighted to introduce you to NORD’s local State Ambassador, Fran Hokkanen. Once again, I’ll let it to our advocate tell her story in her own words:

“Like many of us, the journey into rare diseases began the moment my daughter was born.  The flurry of doctors, multiple tests and several days without definite answers seemed a lifetime.  A definitive diagnosis gave my family our daily regime, something seemingly far more overwhelming than anything you read when ‘you are expecting.’  After several months of tests and medication adjustments I knew I needed to be more involved in advocacy for people with her disease.  Several visits to my local EMS and legislators I knew the process of change isn’t as simple as I hoped.

Banquet2014a - Copy

NORD State Ambassador, Fran Hokkanen

At the beginning of 2015 I came across NORD doing a national Rare Diseases Day event. I signed up to have a table in the capitol rotunda and met many other families advocating for their loved ones’ diseases.  Meeting the NORD rep I was impressed with the overall message of patient advocacy and signed up to help other families navigate the complex system of change.

I am interested in local-level advocacy efforts and providing resources to families looking to get started.  Additionally, I look forward to guiding people wanting to bring their issues to the attention key change agents at both the state and national level.”

Fran and I are still working out the kinks of setting up her contact info. So if you want to get in touch with her, feel free to send me a message at the number or email below and I’ll make sure she gets in touch with you.

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 tboyd@rarediseases.org or at (202) 545-3830.

One Response to “Rare Action™ Road Tour, Tallahassee, FL”

  1. Grace Loeb says:

    Last year on May 1st, 2015, I went to the NORD Regional Membership Meeting in Orlando, FL. I was told by Kristen Angell, that I will be contacted by someone from your organization to become the state ambassador. I’m always in contact with our state Senator Rene Garcia, Bill Nelson and Marco Rubio, and other elected officials locally. I go to their offices here in Miami, meet with them and ask them to co sponsor the (HR6), yesterday I was surprised to hear that some lady named Fran who is your ambassdor, has no idea of what’s going on in our state for the rare disease day! Every year since 2012, I place our events on NORD’s website. I’m an advocate 24/7 for personal reasons, my only child is a rare disease patient. The Rare Disease community needs people to get involved, we need people that get together and learn about their needs. Please ask your ambassador to look at the events in our state, before telling people that there is nothing going on in Florida. I’m always working for my rare disesase community, not from the comfort of an office, but face to face, giving them a very much needed support. South Florida has a Voice and we need to stand together. Guardian Hands, works to make a difference while being different.
    Thank you,
    Grace Loeb.

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