CushieBlog

Now that Cushing’s Awareness Month is almost upon us, here are some ways to help spreading awareness.

How can YOU help spread the word?

• We always need people to be interviewed in the BlogTalk Interview series.  These interviews usually take place on Thursday nights at 7:30PM Eastern but you can do this at any time that’s convenient for you.

If you’re interested in being interviewed, there is more information here.  You can sign up by checking off the box on the Add Your Bio form, sending an email to MaryO, posting in this topic on the boards or filling out this form.

You do not need to be diagnosed to be interviewed!

Spread The Word! Cushing’s Pocket Reference

Robin Writes:

This has been a concern of mine for some time. Your post spurred me on to do something I’ve been meaning to do. I’ve designed something you can print that will fit on the business cards you can buy just about anywhere (Wal-mart included). You can also print on stiff paper and cut with a paper cutter or scissors. I’ve done a front and a back.

Here are the links  (NOTE:  The phone number is correct on the images above but incorrect on the links below and will be fixed soon):

• Front: This card is being presented by a person who cares.
• Back (The same for everyone)

This Topic on the Message Boards

Cushing’s Awareness Day! April 8, 2015

What Can *YOU* Do to help?

• Add your…
  • Bio
  • Doctor
  • Location
  • Travel Resources
• Attend…
  • More upcoming local meetings
• Checklist of Symptoms
• Cushing’s Store
• Documents
  • Nutrition for Patients with Cushing Syndrome. (National Institutes of Health, Clinical Center) – PDF file
  • Cushing’s Help and Support Medical Journal (Excel Version)

• Contributions

Ways to Give Back… in no particular order:

• Endocrine Society News – Cushing’s as Cover Story!ENLetters@endo-society.org to send a letter to the editor. Some will be published and the doctors (endos!) who read this will get the patient’s eye view.
• Participate on the message boards and help support others, especially newcomers. If you see a post with no, or few responses, say something so that the person doesn’t feel like they’re being ignored. I’ve noticed that many people here are very good at this 🙂
• If you’ve had successful surgery, stick around to offer hope to those who come after. Far too many cured Cushies leave, and present an unbalanced look of life after Cushing’s.
• Add (or update) your bio.
• Attend the chats.
• Offer to talk to others offline.
• Send cards or little notes to others who are hurting– either online, or through snailmail. There are some free eCards available through Hallmark, Bluemountain, many places. If you don’t know someone’s email address for an eCard, you can send it to yourself, get the link (URL) when it comes to you and paste that into a PM for the person.
• Use the “Tell a Friend” links on any page to share it with someone who would be interested.
• Be a board moderator.
• Visit other Cushies in the hospital, or go with them to doctor appointments. Call them when you know that they’re “down” – or happy!
• Print your own Cushing’s brochures. These work best on tri-fold brochure paper.
• Print some brochures and pass them out to doctors, Weight Watchers and other similar meetings, people who look Cushie. There are also Cushings-Help business cards available.
• Wear your Cushing’s Awareness bracelet or pin often and tell everyone what it means.
• If someone asks how you’re doing, explain Cushing’s to them, at least a simple version! I’ve been doing this with my piano students and parents – they’re finally getting it!
• Submit your Helpful Doctor info – we need all the good doctors we can get.
• Submit any Helpful Books you may have read – we need all the info we can get.
• Attend meetings, be involved
• Help Jayne get Cushing’s Awareness Day enacted.
• Get a Cushing’s Awareness Silicone Bracelet – or two! These are are made from 100% silicone, and are stronger and longer lasting than rubber bracelets. Reminderband works closely with the production facility to guarantee that quality is consistent in all sizes and colors. To ensure that we are producing the highest quality silicone bracelets on the market, the Reminderband team conducts ongoing production tests and research. Rest assured, Reminderbandis second to none.
• Design your own awareness bands.
• Participate in The Clothes Closet, the book project
• Someday, maybe you’ll meet a Cushie without a computer. Offer to print out helpful pages for him/her, or invite her over to check out your computer. Invite him to a local meeting, or give her the number to call for more info.
• Help someone fill out insurance or disability forms.
• Ask someone how you could help them.
• Share your good news – it spreads like wildfire!
• Pray, or send healing thoughts, to those who need them
• Post relevant News Items that may help someone else.

• Use iGive.com when you buy things online; buy books using the links on the book pages; tshirts and such from the giftstore. Then WEAR those tshirts!
• If you see on the Calendar that today is someone’s birthday, or surgery anniversary or other special event, please acknowlege that on the boards.
• Food and Exercise Journal
• Helpful Hints For Dealing with Cushing’s Symptoms
• Medical Journal (Print version)
• Cushing’s Help and Support Medical Journal (Excel Version)
• LindaP’s Cushing’s Tips
• MelissaTX’s tips for new patients: How to steady your feet and get diagnosed quickly
• Talk to Your Doctor
• Participate…
  • Participate…
  • Participate…in the Chatroom, Wednesdays, 9PM EST
  • Message Boards
  • Secret Someone (Fall only)
• Shop iGive

Thank you for your contribution to the Cushing’s Help and Support Community!

• Donations

When I started Cushings-Help.com, it was my intention to make it a place for all to receive much needed free help and support. That is still my intention; however, these costs keep mounting, so you now have the option of making a donation to help with the running of these websites. If you are satisfied with our support, information and/or the help you receive here, please consider making a donation. Your donation will help to offset the costs of keeping these sites online and free to all who need them.

To register and participate in any of the Cushing’s Help and Support websites and services is free. However, it is through the generosity of our members that these sites remains free. Members who choose to “subscribe” or “donate” help keep the website fees paid so that the thousands of members can enjoy the support offered.

Your donation helps with the upkeep of the seven sites in the Cushing’s Help family, cushings-help.com, addisons-help.com, cushings-support.com, cushings-info.com, cushings.invisionzone.com/ [message boards], cushie.info and cushingsonline.com; the message boards, the CushieWiki, podcasts, chatrooms and much more.

Any size donation will be much appreciated.

Please Help Keep Cushing’s Help and Support Running!

Donate to Please Help Keep Cushings Help Running!

Thank you so much for your donation!

• Sign Amber’s Petition. www.ipetitions.com/petition/CushingsDiseaseAwarenessAmber writes:
  

  Thought I would explain what this petition can do….First of all, it adds power and substance to our efforts to have a Nationally recognized day if we have an extensive, following.

  Second, this petition and all the signatures can be printed and sent to a Senator, politician, or medical professional that may be will to take on the cause.

  Third, this petition and its list of signatures are IDEAL for releasing to the press and media for coverage and will assist GREATLY in getting the word out there.

  It is so simple. The petition has a place to add your name and a comment if you want. PLEASE take a moment to sign and formward it on to all the people in your address book, your friends and family.

  We all get forwarded messages all the time, but this one is dear to our hearts and can make a differnce! WHATS STOPPING YOU!?

  PLEASE SUPPORT OUT EFFORTS TO RAISE AWARENESS! YOUR HELP IS NEEDED AND IT IS SO EASY!

• CherylF suggests:
  

  I contacted Senator Inhofe’s (OK) office recently, and he is happy to reintroduce the Cushings Awareness Day Resolution for April 8, 2007.Please contact your US Senator’s office and ask them to support this Resolution. I’m not sure when Senator Inhofe will try and contact other senators but if you send a letter soon, and call your senator to let him know your letter is coming, and that Senator Inhofe is going to reintroduce the Resolution, it will truly help.

  Last year the Resolution was introduced, but to my understanding, only one senator-another from Oklahoma was the only one to contact Senator Inhofe’s (Okla) office to co-sponsor the Resolution.

  If you send a letter requesting it, you might also request that a reply be sent back to you . Please try to send the letter in the next two weeks if possible.

  Last year we had a small Conference in OKC celebrating the passing of the Resolution, and there is some information on that conference on the CUSH website (CUSH.org), and I believe on this one as well. We won’t be having a specific conference in OKC, but ask that you bring awareness in your own states, communities as you can. Last year a TV station in OKC aired a small segment about the conference & Cushings Awareness Day, as did one in Nebraska- with Autumn as the contact person.

  As the OK CUSH rep as well, I might have something for those around the OK area, a small get together if anyone is interested…more like a dinner or luncheon so we can visit each other. You can always contact me for more info if you’d like…together we can make a difference!
  Thank you in advance, Cheryl Farrar- CUSH Vice President

• Contact your Senator Print out a sample letter to send to your congress person or senator or download it in Word format.More information here
• Follow Jayne’s Lead. She writes:
  

  Of course, I’ll be supporting the day and writing letters and emails and making phone calls. I hope to find us a celebrity ribbon wearer. Something else I am working on is national TV recognition with the major networks and National publications. You can email them as well on their “contact us” info. Contact the hosts of the show and the producers to mention April 8th and Cushing’s Awareness.I am going to find out information on getting money (grant) to publish magazine adds/articles for the April editions, if not this year then for next year. I know they are probably being printed, but I just thought of this idea. My local paper will run a small 2×3 ad for starting at $300. I want the whole page! I thought about having a yard sale to raise money to put in an ad, but doubt that I’d make enough. Oh Well!

  Something else I thought about is getting a chain pharmacy to post cushings info for that week prior to the 8th. Medical school journal/papers can also be contacted. I know I must have emails over 100 doctors last year on the 7th (once I know that it had passed). I’ll be setting up a booth at the women’s Forum again this year. I hope to set up at some health expo’s and at the local Hospital or at least make/pass out flyers.

• Wear Cushing’s Bracelets or T-Shirts to promote Cushing’s Awareness. Cushing’s Awareness T-Shirts and other products are available here: Cushie GiftStore.  Also check out Robin’s Cushie Store.
• Post your ideas and what you have done here:http://cushings.invisionzone.com/index.php?showtopic=19173

2006:

For Immediate Release:

April 6, 2006

INHOFE DESIGNATES ‘NATIONAL
CUSHING’S SYNDROME AWARENESS DAY‘

More info here

April 8, 2006, the Cushing’s Understanding, Support & Help Organization (CUSH) petitioned in the USA to have April 8 be declared as Cushing’s Awareness Day. This date was chosen because it was Dr. Harvey Cushing’s Birthday. More info here

The Cushing’s Awareness Day Proclamation, fromhttp://thomas.loc.gov/cgi-bin/query/z?c109:S.RES.423:

Designating April 8, 2006, as `National Cushing’s Syndrome Awareness Day’. (Agreed to by Senate)

More info here

Filed under: Cushing's, Rare Diseases | Tagged: BlogTalkRadio, Cushing's Awareness Day, Cushing's Pocket Reference, give back, Interview, Volunteer | Leave a comment »