Finding the team

Another great article from Kelly 🙂

Zebraontheside

Finding good doctors is so frustrating. The one that is good for one person, may not be good for another person. I have also found that sometimes a friend will rave about their doctor and then I find out later that they had serious problems that their doctor was ignoring. I have also found that some of my best doctors were “the worst doctor” someone else has ever seen. There have been times that I have asked for a referral from a doctor only to find that it was not a good choice at all. There are so many things that come into play here.

One of the things that I have found to be the best approach for me is when I look at what my needs are and then try to figure out which doctor has the best approach for that problem. This requires a lot of work…

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Rally for Medical Research Hill Day

Held every September, this Capitol Hill Day event continues the momentum established in 2013, and includes nearly 300 national organizations coming together in support of the Rally for Medical Research.

The purpose of the Rally is to call on our nation’s policymakers to make funding for National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED.

The next Rally for Medical Research Hill Day is Sept. 22, 2016.

Sign up to receive updates, including a link to register once it becomes available.

It is more than amount

Taking hydrocortisone – seems like a lifelong thing for so many of us! I’ve been taking it for over 20 years, every day.

Zebraontheside

I have been taking hydrocortisone for almost a year now and I have to do a 24 hour urine free cortisol. This is old hat *boom boom chick* for me. I went to the lab yesterday to pick up the jugs. Yes, you heard right – JUGS. Plural. I did these all of the time when I was testing for Cushing’s and after. I usually try to restrict how much I drink but I am really uncomfortable on tests that I get it all in 1 jug. I really need 2 and could easily have done 3 before. The technician was shocked when I asked for multiple jugs and told me that I could just bring it in something else because she really only needs to know the volume and can take the aliquot out of the one jug with acid in it.

*thoughts about the other times that I…

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Nominations Now Open for RareVoice Awards

rare-voice

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-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

RDLA Congressional Caucus

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

   REGISTER   

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/