Blue and Yellow – we have those colors on ribbons, websites, T-shirts, Cushing’s Awareness Challenge logos and even cars.
This is the yellow PT cruiser I had rented for the Columbus, OH meeting in 2007. I didn’t ask for yellow. That’s just what the rental company gave me. Somehow, they knew.
This meeting is the one when we all met at Hoggy’s for dinner although some of us travelers stayed at this hotel.
I’m the one in yellow and blue.
Later in 2007, I bought my own truly Cushie Car. I even managed to get a butterfly on the tags.
So, where did all this blue and yellow come from, anyway? The answer is so easy and without any thought that it will amaze you!
In July of 2000, I was talking with my dear friend Alice, who ran a wonderful menopause site, Power Surge. We wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that maybe I could.
I didn’t know much about HTML (yet!) but I knew a little from what Alice had taught me and I used on my music studio site. I didn’t want to put as much work <COUGH!> into the Cushing’s site as I had on the music studio site so I used a now defunct WYSIWYG (What You See Is What You Get) web editor called Microsoft FrontPage.
One of their standard templates was – you guessed it! – blue and yellow.
TaDa! Instant Cushie color scheme forever. Turns out that the HTML that this software churned out was really awful and had to be entirely redone as the site grew. But the colors stuck.
Now, in this day of mobile web browsers and people going online on their cellphones, the website is being redone yet again. But the colors are still, and always, blue and yellow.
In Day 9 on April 9, 2015, I wrote about how we got the Cushing’s colors of blue and yellow. This post is going to be about the first Cushing’s ribbons.
I was on vacation in September, 2001 when SuziQ called me to let me know that we had had our first Cushie casualty (that we knew about).
On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.
For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.
Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.
Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.
The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.
Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.
The image at the top of the page shows the first blue and yellow ribbon which were worn at Janice’s funeral. When we had our “official ribbons” made, we sent several to Janice’s family.
Janice was the first of us to die but there have been more, way too many more, over the years. I’ll write a bit more about that on Day 21.
In Day 9 on April 9, 2015, I wrote about how we got the Cushing’s colors of blue and yellow. This post is going to be about the first Cushing’s ribbons.
I was on vacation in September, 2001 when SuziQ called me to let me know that we had had our first Cushie casualty (that we knew about).
On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.
For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.
Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.
Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.
The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.
Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.
The image at the top of the page shows the first blue and yellow ribbon which were worn at Janice’s funeral. When we had our “official ribbons” made, we sent several to Janice’s family.
Janice was the first of us to die but there have been more, way too many more, over the years. I’ll write a bit more about that on Day 21.
Blue and Yellow – we have those colors on ribbons, websites, T-shirts, Cushing’s Awareness Challenge logos and even cars.
This is the yellow PT cruiser I had rented for the Columbus, OH meeting in 2007. I didn’t ask for yellow. That’s just what the rental company gave me. Somehow, they knew.
This meeting is the one when we all met at Hoggy’s for dinner although some of us travelers stayed at this hotel.
I’m the one in yellow and blue.
Later in 2007, I bought my own truly Cushie Car. I even managed to get a butterfly on the tags.
So, where did all this blue and yellow come from, anyway? The answer is so easy and without any thought that it will amaze you!
In July of 2000, I was talking with my dear friend Alice, who ran a wonderful menopause site, Power Surge. We wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that maybe I could.
I didn’t know much about HTML (yet!) but I knew a little from what Alice had taught me and I used on my music studio site. I didn’t want to put as much work <COUGH!> into the Cushing’s site as I had on the music studio site so I used a WYSIWYG web editor called Microsoft FrontPage.
One of their standard templates was – you guessed it! – blue and yellow.
TaDa! Instant Cushie color scheme forever. Turns out that the HTML that this software churned out was really awful and had to be entirely redone as the site grew. But the colors stuck.
Now, in this day of mobile web browsers and people going online on their cellphones, the website is being redone yet again. But the colors are still, and always, blue and yellow.
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:
And
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
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
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).
This is the yellow PT cruiser I had rented for the Columbus, OH meeting in 2007. I didn’t ask for yellow. That’s just what the rental company gave me. Somehow, they knew.
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