Taking hydrocortisone – seems like a lifelong thing for so many of us! I’ve been taking it for over 20 years, every day.
Year: 2016
Nominations Now Open for RareVoice Awards
Rare Disease Legislative Advocates is pleased to open nominations for the 5th Annual RareVoice Awards, a celebration to honor advocates who give rare disease patients a voice on Capitol Hill and in state government.
Wednesday, November 16, 2016
Arena Stage in Washington, DC
If you know of someone who has been a “Voice” for the rare disease community and should be honored for their work, please click here to submit your nomination.
RareVoice Award nominations are open to the public. We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders and political advocates in their state and our nation. We have nominations open for the following categories: Congressional Staff, Patient Advocate or Patient Organization (at the state or federal level), and Government Agency Staff.
Deadline to submit nominations is July 31, 2016.
Pituitary Patient Support Group Meeting
Pituitary Patient Support Group Meeting, Saturday May 28, 2016.
Neuro Endocrine expert Dr. Pejman Cohan will be speaking. “From Diagnosis to Treatments”
There will be time for Q&A and lunch served after the meeting.
Meeting 10:30am-11:45am Lunch 11:45am-1:00pm
Location: John Wayne Cancer Institute- 2nd floor conference room, 2200 Santa Monica Blvd. Santa Monica, CA 90404
Free parking with validation, behind building in the JWCI parking lot.
Please RSVP to Sharmyn at pituitarybuddy@hotmail.com
Download flyer here.
RDLA’s May Legislative In-Person Meeting
Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs: Representative Leonard Lance (R-NJ), Representative Joe Crowley (D-NY), Senator Orrin Hatch (R-UT), and Senator Amy Klobuchar (D-MN); and the Office of Senator Mark Kirk (R-IL) will host a briefing on:
The NIH and FDA: Vital Agencies in the Fight Against Rare Diseases
Wednesday, May 18th, 2016
2:00 pm – 3:00 pm
Senate Capitol Visitors Center Room 201, Washington, D.C., 20004
Moderator: Ellie Dehoney, Vice President of Policy and Advocacy, Research!America
- The Undiagnosed Disease Program at the NIH
- William Gahl, M.D., Ph.D, Clinical Director, National Human Genome Research Institute (invited)
- Precision Medicine – The White House & the NIH
- Matthew Might, Strategist, Executive Office of the President, The White House, Associate Professor, University of Utah, Associate Professor, Visiting, Harvard Medical School, Founder, NGLY1.org (invited)
- The Value of Patients to Clinical Innovation at the NIH
- Kayla Martinez & Dorelia Rivera, NOMID Patient
- The Role of NIH Funding in Kickstarting Biomedical Innovation
- Christopher C. Gibson, Ph.D, Co-Founder & CEO, Recursion Pharmaceuticals
Come and enjoy an array of refreshments or have coffee and snack break while learning about the role of our health agencies.
The MAGIC Foundation’s Annual Adult Convention
Lots of Cushies go to this meeting. Dr. Theodore Friedman (Dr. F) will be one of the speakers.
The MAGIC Foundation’s Annual Adult Convention
July 21 – 24, 2016
Program
Download the 2016 Convention Program by Clicking Here.
Location
The Westin Lombard Yorktown Center
70 Yorktown Center
Lombard, IL 60148
(630) 719-8000
Hotel Room Rates and Reservations
$104 per night ($115.44 with tax) All rooms have refrigerators!! A limited number of roll-a-ways and cribs are available at no cost so if you need one be sure to request one when making your hotel reservation. To make hotel reservations call the Westin at 888-627-9031, and mention The MAGIC Foundation guest room block, or book online at:https://www.starwoodmeeting.com/events/start.action?id=1602112093&key=3A0B99EE
Airline Transportation
Please contact your local travel agent or search the internet for the most reasonable price. Be sure to search often and book early as great fares sometimes become available. The airport of choice is O’Hare (ORD) which is located closer to the hotel. Midway (MDW) is in Chicago also but a distance from the hotel. Please read “hotel transportation” below before booking a flight to Midway.
Hotel Transportation
Free shuttle service is provided by Windy City Limo’s to the Westin Lombard from O’Hare Airport only! The shuttle schedule is as follows: O’Hare Airport to the Westin – Thursday – 11 am, 1 pm, 3 pm, 5 pm and 7 pm Westin to O’Hare Airport – Sunday – Pickups at 8 am, 10 am, noon, 2 pm and 4 pm Shuttle buses will have a MAGIC sign in the window and will pick up at the following O’Hare locations: Terminal 1, Door 1G * Terminal 2, Door 2E * Terminal 3, Door 3G * Int’l Terminal, Door 5E Pick up will be in the middle aisle when you exit the doors from baggage claim. If you are unable to find the shuttle, you can contact Windy City at 866-949-4639. You may choose to arrive at Midway Airport but there is no free transportation available and a taxi will cost approximately $40.
NOTE: If you use a power wheelchair/scooter or other device which cannot be folded and need wheelchair accessible transportation, you can contact Special Needs Chicago at (630) 668-9999 or visit their website to make arrangements online, specialneedschicago.org
Register here: https://www.magicfoundation.org/annual-adult-convention/
Rest
So many of my posts are about napping. As another musician, I like the concept of “rests” in both contexts 🙂
Sometimes it isn’t you but them…really.
Thanks so much for sharing your thoughts, even though it’s hard.
It takes two
Thanks for sharing!
Sleep, the Goldilocks and the three bears of Cushing’s Disease and after
Read the whole article at https://zebraontheside.wordpress.com/
Insomnia was one of the first things that troubled me enough to try to get help for with Cushing’s Disease. By my last year in music school, I had flipped my schedule around. I felt best and got more done if I practiced through the night and slept through the day. That year was wonderful for productivity because I was able to do what worked best with my body. A couple of years later, my sleeping problems had taken over my life. I was trying to get a diagnosis. In school for a second and third bachelor’s degree while working at Starbucks, I barely slept. Because I wasn’t sleeping, I decided to just keep busy….
Cushing’s Awareness Challenge Starts Now!
Read all the blog posts here, on the right side.
It would be great to share some (ALL?) on Twitter, Facebook, wherever to get the word out even further.