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Jayne

Long-time Board Member
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About Jayne

  • Rank
    Long-time Board Member

Profile Information

  • Location
    Fredericksburg, VA
  • Interests
    Elementary school teacher, stay at home mom
  1. Mary, I am hoping that a solution can be found to keep this website open. It has so much knowledge for so many undiagnosed cushies and holds too many memories for me. No where else can I look to find "In Memory" for all the cushie friends I've met and known for so many years. it is almost like a high school yearbook. I am not on any other social media. You have touched so many thousands of peoples lives with this site. Jayne
  2. Happy National Cushing's Awareness Day to you!!! I was so happy! My sister called me this morning to wish me the same. She' so thoughtful. She said she'd listen to the web-cast tonight at 9:00, if her kids got to bed on time. Jayne Cushing's Awareness Advocate
  3. INHOFE DESIGNATES ?NATIONAL CUSHING?S SYNDROME AWARENESS DAY? April 3, 2008 WASHINGTON, D.C. ? U.S. Senator Jim Inhofe (R-Okla.) today announced the designation of April 8, 2008 as ?National Cushing?s Syndrome Awareness Day.? Inhofe?s resolution (S. Res. 498) creating the designation passed the Senate last night by unanimous consent. Inhofe introduced this resolution to broaden public awareness and show his continued support for those suffering from this disease. ?Cushing?s syndrome often goes undiagnosed or misdiagnosed, many times leading to death, because the initial symptoms are shared with a number of milder illnesses,? Inhofe said. ?Since awareness is low, doctors do not always run the tests necessary for diagnosis, and patients do not know to ask for them. It is my hope that ?National Cushing?s Syndrome Awareness Day? will help Oklahomans and everyone suffering with this disease to receive the best possible health care.? Cushing?s Syndrome is an endocrine or hormonal disorder. It is caused by over-exposure of the body?s tissue to high levels of the hormone cortisol. An estimated 10 to 15 people per million suffer from this debilitating disease. Common symptoms include abnormal weight gain, skin changes, fatigue, diabetes, high blood pressure, and depression. Over-production of cortisol is commonly associated with the treatment of asthma, rheumatoid arthritis, and lupus. Additionally, delayed treatment of Cushing?s Syndrome significantly reduces treatment options, such as radiation therapy. Thus, it is imperative that both doctors and patients heighten their awareness of Cushing?s Syndrome.
  4. Cheryl, All the info for a National Cushing's Syndrome Awareness Day, 2008 can be posted on this site as well. There are so many wonderful and loving people on this site that will benefit from being able to access all the info, and a copy of the letter and of the resolution right here. So many people can reply and send congratulations to all cushies all over the world. Even our angels in heaven can see it here! The pituitary and other cushing's groups can view every comment, too. This is a great idea since the message boards are not up and running for your organization. Jayne Cushing's Awareness Advocate
  5. Yeah, Yeah Hip, Hip, Hooray! Congress passed our AWARENESS DAY! Cushies all over can be happy and celebrate! Jayne
  6. I know Sue is Happy OUR day is happening again!!! With love to Sue, Jayne
  7. Just trying to keep the memory of Sue alive. With love, Jayne
  8. Hey, you guys are great!!! Thanks. steal away... the other site has a write up on how i put the booth together. I thought it was easy, but I used to be an elem teacher. Hi Jo! Things are behaving. I just wish I had more energy, I still need naps everynow and then. Not sure if it's running and trying to keep up with my kids. Thanks for asking. Please Pm me if ya'll go back to NIH. As for NIH, I am not sure when they will have another health fair. keep peeking on these boards for info or go to NIH.com. Oh yeah-- I called another place having a health fair in March. They wanted $$$$ 475 from me to rent space!!! HA As for the booth itself, there were around 300-350 women attending. I passed out my own flyer( with symptoms, information sources, web sites, and brief overview) to to all who whould take it. This is my 4th year at the womens forum, so there is about a 75 person turn over. The day is so wonderful many ladies return year after year. I had about 25 women stop and ask more questions and several conversations. I really do so much better with phone conversations if any one really needs help with advocacy. PM your phone number and the best times to call. I can answer more questions that way. Always remember to put out chocolate at your booth! Dark chocolate by dove is "healthy" Jayne
  9. someone had asked about the booth, so here it is Jayne
  10. I'm just going to add my 2 cents worth of knowledge. When I inquired about a National Day- initially I was told both the House and Senate need to pass a resolution and have it approved by the president. Then I was told after further inquiry that Congress will only accept certain types of days (I guess because it is easier to do it every year-- where one Senator sends a missive. The other Senators have 48 hours to question or deny the resolution missive, then if not contested- it automatically passes). There may be too many groups trying to have National Days. I did write the President. I talked with several people in the WH. I received a reply letter from the Director of NIH, congratulating me for my efforts. My Representative, JoAnne Davis, did address the House on My behalf in regards to Cushing's. I believe that my letters and news paper articles are posted on the boards. We will have to be thankful and grateful for the Resolution by Senator Inhofe. Remind every one to send his office thank you's. Knowing that we do have a NCAD in 2008, take it upon yourself to pass the word. Write a letter to the editor of several papers and TV shows. Pay for an ad in a National paper or magazine. Open up the phone book and mail a flier to everyone in the physicians section. Make your own exhibit, present it to people. Make and post a flyer at the hospitals. Make you own ways to raise money, bakesales, yard sales, special collection at church/school, from your doctors & nurses... Jayne Cushing's Awareness Advocate It is easy for you to come up with ways to spread the word.
  11. Yeah I'm glad you started this for the new year. I was waiting for the holidays to settle down. 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 2x3 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. I'll get started now. Jayne
  12. Lynne, Speaking of next year... I asked Mary to ask the CUSH conference attendees what they want to do about next year. I made several suggestions, like east coast in 2007 and west coast in 2008. I'll let folks stay with me Maybe we can tour Washington DC and have a Senator or Representative speak at a CUSH conference. I am hoping to get a NCSAD voted on in Congress for every year (perpetual). This will be a big letter writing campaign- to include doctors and everyone we know. I hope Sue is smiling for us in Heaven right now! Jayne
  13. 109th CONGRESS2d SessionS. RES. 423Designating April 8, 2006, as `National Cushing's Syndrome Awareness Day'. IN THE SENATE OF THE UNITED STATESApril 4, 2006Mr. INHOFE (for himself and Mr. COBURN) submitted the following resolution; which was considered and agreed to --------------------------------------------------------------------------------RESOLUTIONDesignating April 8, 2006, as `National Cushing's Syndrome Awareness Day'. Whereas Cushing's Syndrome annually affects an estimated 10 to 15 people per million, most of whom are currently between the ages of 20 and 50; Whereas Cushing's Syndrome is an endocrine or hormonal disorder caused by prolonged exposure of the body's tissue to high levels of the hormone cortisol; Whereas exposure to cortisol can occur by overproduction in the body or by taking glucocorticoid hormones, which are routinely prescribed for asthma, rheumatoid arthritis, lupus, or as an immunosuppressant following transplantation; Whereas the syndrome may also result from pituitary adenomas, ectopic ACTH syndrome, adrenal tumors, and Familial Cushing's Syndrome; Whereas Cushing's Syndrome can cause abnormal weight gain, skin changes, and fatigue and ultimately lead to diabetes, high blood pressure, depression, osteoporosis, and death; Whereas Cushing's Syndrome is diagnosed through a series of tests, often requiring x-ray examinations of adrenal or pituitary glands to locate tumors; Whereas many people who suffer from Cushing's Syndrome are misdiagnosed or go undiagnosed for years because many of the symptoms are mirrored in milder diseases, thereby delaying important treatment options; Whereas treatments for Cushing's Syndrome include surgery, radiation, chemotherapy, cortisol-inhibiting drugs, and reducing the dosage of glucocorticoid hormones; Whereas Cushing's Syndrome was discovered by Dr. Harvey Williams Cushing, who was born on April 8, 1869; Whereas the Dr. Harvey Cushing stamp was part of the United States Postal Service's `Great American' series, initiated in 1980 to recognize individuals for making significant contributions to the heritage and culture of the United States; Whereas President Ronald Reagan spoke on April 8, 1987, in the Rose Garden at a White House ceremony to unveil the commemorative stamp honoring Dr. Harvey Cushing; Whereas following the ceremony, President Reagan hosted a reception in the State Dining Room for Mrs. John Hay Whitney, Dr. Cushing's daughter, and representatives of the American Association of Neurological Surgeons; and Whereas the Senate is an institution that can raise awareness in the general public and the medical community of Cushing's Syndrome: Now, therefore, be it Resolved, That the Senate--(1) designates April 8, 2006, as `National Cushing's Syndrome Awareness Day';(2) recognizes that all Americans should become more informed and aware of Cushing's Syndrome;(3) calls upon the people of the United States to observe the date with appropriate ceremonies and activities; and(4) directs the Secretary of the Senate to transmit a copy of this resolution to the Cushing's Understanding, Support & Help Organization.
  14. Jayne

    Letter of response

    Yeah, Autumn!!!! Jayne
  15. Cherri, If you click on "Track this topic" at the top of the thread, you will get an email when anyone posts here. I will post here when I hear from the White House, too. Jayne
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