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.

Brigham & Womens Hospital’s Pituitary Day 2014


In partnership with the Brain Science Foundation, the Brigham and Women’s Hospital Pituitary Neuroendocrine Center is pleased to present

Pituitary Day 2014

Saturday, March 29, 2013
8 AM – 5 PM
Bornstein Amphitheater
at Brigham & Women’s Hospital
75 Francis Street
Boston, MA

This conference is intended to unite patients, caregivers, family and friends with leading clinicians, researchers, nurses, and other experts to discuss the latest in pituitary diagnosis and treatment. All patients, caregivers, family and friends are welcome!

For more information, please visit or call Sarah Donnelly at 781-239-2903.

40 Days of Thankfulness: Day Nineteen

Today I’m thankful for my paternal grandmother.

I was thinking of her last night when we were watching an old episode of This Old House and they were remarking about how Boston used to be a lot of swamp land.  I told DH that The Fens, (Fenway Park is on the outskirts), used to be a wetland for a long time and is now a beautiful park.

When I was growing up, my Nana used to live right on the outskirts of The Fens and in the summers I used to go there to play on the swings and run through the gardens.

So, I started thinking about my grandmother again and how brave she was.  In the early part of the century she had been living in Scotland with her husband and they had a young son – my father.   Her husband was in the Black Watch during World War I, and he died in Peshawar, India.

For whatever reason, she and her sister (who she never spoke to!) decided to come to America, to Boston to live.  So, when my dad was only 5 they sailed to the US.  I have pictures of him coming off the boat wearing a little kilt.

Somewhere along the line Nana married again, to a hard-working man who helped provide for their little family.

Until my grandmother died, she was a waitress at a YMCA.  But she managed to save a pile of money – under her mattress, in the closet, behind the sofa.  It was amazing.  Her American Dream, I guess.

I cannot imagine having her courage, leaving home with a small child, and starting life anew in a completely new country.

I wish I had been able to tell Nana while she was still alive how much I admired her.  I am thankful that she came here – or I wouldn’t have been born.

%d bloggers like this: