Monday, April 8, 2013

Cushing's Awareness Day, 2013


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Today, April 8th, is Cushing's Awareness Day. Please wear your Cushing's ribbons, t-shirts, awareness bracelets or Cushing's colors (blue and yellow) and hand out Robin's wonderful Awareness Cards to get a discussion going with anyone who will listen.
And don't just raise awareness on April 8.  Any day is a good day to raise awareness.

What Can *YOU* Do to help?
Check out these ideas
1) status of the Cushing's Awareness Day legislation... who has signed, who do we need to get? I have contacts to the US congressfolks from Houston, and I wanted to get them to sign if they have not. Can we get someone to testify before Congress? Can we get any federal funding? Can we rally with other rare disease groups to get in front of that mic on CSPAN?
2) can we do a fund drive for the month prior to April 8th in order to fund all of our projects and this site? can we keep track of how much each board member raises with little thermometers that show how much is collected, in order to get people excited about how much money is being generated?
3) can those who have had surgery in the past year right up there story to be published on April 8th for awareness day? I hope that planning this far in advance will allow us to get more articles published. Perhaps those who already had surgery can ask the paper to re-run their story with an update and reminder about awareness day.
4) can someone can write a press release to the news channels to get coverage for awareness day
5) we get someone to create a very nice postcard that we all can print from our home at our expense on card stock. Then we each pay for the postage to send the cards to all of our friends and families. Perhaps we can ask our family and friends to donate money to us that we can then donate to this board...
6) I need a Cushing's bumper sticker! I know there are some for sale on the store site, but I was wondering if we can get some heads on this project to get something really catchy. I would put one on my card if we could get a really cool design going... any graphic artists wanna take this up?
7) I love the radio blog shows. I think they are so great. Perhaps we can add that icon to all of our Myspace, Facebook, and personal websites. Do we have an icon that we can post to get people to this site?
8) Have people set up care pages to keep friends and family informed about all the tests, doctors appts and then following us through surgery and post op. I have over 65 people subscribing to my care page, and I am confident that those 65 people didn't know anything about Cushing's until I told them about it. If we inform little circles of 50 all around the US and world, then we will be doing a great job increasing awareness. It is free, and I love mine. I control the tone of the site, and no one talks back to me there!
9). What can we do in the medical community? I'd like to see us patients doing more to lead the doctors down the proper path. ----- Do we get a booth at a national endocrinologist conference and pass out information we want them to know, with Cushies staffing the booth? ----- Do we develop a pamphlet specifically for doctors? ----- Do we start a partnership with the national association of endocrinologists (not sure if this really exists, but you know what I mean) and work together to get more research done on Cyclic Cushing's by offering ourselves up as research participants?
10) Perhaps we contact every Women's health magazine on the market and submit some articles in February for consideration of their April magazine.
11) Perhaps we buy the google ads based on key words that appears in email. The links pop up on the right side bar while people read their gmail or other online email. If the person says ponch, fat, or other key words, then the side bar will give a link to this site.
12) We can distribute DVDs of Kate's show and the two mystery diagnosis shows (Sam and Sharmyn) to doctors and endos? To new Cushies? This will take some money for DVDs and postage, but if we focus on raising some money, then we can allocated funds to these worthwhile expenses. Now, I am not sure if we need permission from Mystery Diagnosis or Nat Geo for that, but someone can take this project and get all the details.

I'd like to see us set up a goal-driven campaign for Cushing's Awareness Day. This will really help motivate us into seeing how much interest and good we are generating as a group.
# of newspaper articles submitted
# of newspaper articles publised
# of magazine articles submitted
# of magazine articles published
# of dollars raised
# of dollars allocated to outreach (keyword ads in gmail and others, etc)
# of carepages set up
# of care page followers (in friends and family.. I have 65 already) etc.

If we each decide to lead a project to get all of this taken care of, we could be in a very good position to launch a really big Cushing's Day Awareness in April. I am really looking forward to seeing all the creativity that exists of the minds of my brilliant Cushie friends!

This year, Novatis has made 2 TV commercials that will air this month to help with Cushing's Awareness.

View them in advance here:

http://youtu.be/Z2vS7sVvx0o

And
http://youtu.be/80TrJa4ZlrQ

Also, a bit late for Cushing's Awareness Day this year but a big hope for the future is the upcoming Congressional Caucus on Rare Diseases:

April 16th Rare Disease Congressional Caucus Briefing
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Rare Disease Legislative Advocates and Novartis, in coordination with Rare Disease Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY)  will host a briefing on “Medical Innovation for Rare Diseases: Challenges that Our Country Must Address.”  Tuesday, April 16, 2013 from 12:00 PM – 1:00 PM in Rayburn B-318

Discussion:
  • Advancements and new developments in the treatment of rare diseases
  • Advances in the rare pituitary disease space
  • Opportunities and challenges for those living with a rare disease
  • Opportunities to discover new treatment options
Speakers  include:   
  • Robert Knutzen – Pituitary Network Association; Chairman and CEO
  • Louis Pace – Cushing’s Support and Research Foundation; President
  • Dr. Vijay Iyengar – Novartis Rare Disease Franchise; Vice President
Food and Refreshments will be served.

General Public may RSVP by clicking here

Staffers may RSVP by contacting Helen Dwight in the office of Rep. Leonard Lance (202-225-5361) or Nicole Cohen in the office of Rep. Joe Crowley (202-225-3965).