Registration Open for Regional Legislative Conferences and In-District Lobby Days

Rare Disease Legislative Advocates will host In-District Lobby Days to facilitate meetings for rare advocates across the country with their elected federal officials during the summer Congressional recess (July 18th through September 5th).

Registration is open through July 1st.

Federal elected officials need to hear regularly from constituents affected by rare disease.  Meeting with your Representative and Senators throughout the year is critical to building a relationship.  These meetings are an opportunity to invite them to join the Rare Disease Congressional Caucus and to highlight legislation that could be beneficial to the rare disease community.

To help advocates prepare, we are holding regional Legislative Conferences in Boston on June 28th and in both Chicago and Seattle on June 30th. These half-day conferences will feature remarks from federal elected officials, academics, patient advocates and other rare disease stakeholders.  Lunch will be provided. Registration will be available here through June 22nd. Don’t miss the opportunity to learn and network with other local advocates!

We will also hold two preparatory webinars.  The first, to be held on June 16th at 2pm ET/11am PT, will provide an overview of the regional Legislative Conferences and In-District Lobby Days. The second, to be held on July 13th at 2pm ET/11am PT, will cover In-District Lobby Days in more detail including legislative issues which advocates may want to raise in their meetings.

Cushing’s Awareness Challenge, Day 6

This seems to be nostalgia time.  Yesterday, I posted a picture from 2007.  This one is from Rockford, IL, Cushing’s Weekend, 2006:

asleep-in-rockford

 

Yes, that’s me asleep.

I flew out to Chicago, drove up to Rockford, IL.  The next day, we all drove up to Wisconsin to have lunch with some other Cushies.  I missed most of that meeting because I fell asleep on the sofa. 😦

Tired, fatigued, missing the main event because I can’t stay awake.

Something similar happened today.  I ring handbells at my church.  I got up and rang at the first service just fine.  I brought my mom home at 9:30.   I needed to leave at 10:30 for the other service we were playing.  Checked my email.  Next thing I knew, it was just after 11.  AACK!

After a quick note apologizing to the director, I fell asleep again and here it is, nearly 6:30pm.  Another day, gone.

I hate this, sleeping all day, missing things, missing beautiful weather.

But that’s life, post-Cushing’s.

sleep

 

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