MaryO

July 22, 2008: These 3 blogs were all hit by my hacker a few weeks ago. The new Cushing's blog is http://cushingshelp.blogspot.com/ The new Barbados blog is http://beautiful-barbados.blogspot.com/ The new music studio blog is http://oconnor-music.blogspot.com/ I'm hoping by hosting these through Blogger instead of on my own server they won't be vulnerable to hackers anymore. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Original post: I spent the last couple days making a new blog - actually 3 of them, none what I intended. It was my idea to start a blog for people who updated their bios often so I set about looking at blog skins. I liked one of the tropical ocean so much that I decided to make one for our Barbados vacations. I already had a website that grew out of my posting info for guests who would come to stay with us. The new Bajan Blog is at http://barbados-crane.com/blog/ Then it occurred to me that maybe I could attach one to my site for my music studio where students/parents could ask questions. And http://oconnormusicstudio.com/blog/ was born. Finally, I got back to the Cushing's one...and decided to use it for me. I renamed it Cushing's, Cancer & Music since those are the main components of my life these days. That one is at http://cushings-info.com/blog/ Feel free to check any, all or none out and comment if you want. Now I hope I have enough to say to keep these going! LOL

Thanks, Adrienne! Yes, I have the big scar and the numb abdomen. I was told by doctors not to take the NSAIDs anymore - I've been taking arthritis meds for about 30 years or so and my arthritis is really killing me. I can't take the GH anymore, and I'm supposed to "cut down" on vitamin C but no one has ever told me what to cut down to. Sometimes, I get so down about this. Friends, family, everyone thinks that since there was no chemo or radiation, I'm homefree and this isn't the case at all. I didn't have chemo or radiation because there is nothing yet that will kill kidney cancer There's some stuff still in clinical trials, but nothing standard yet. I can feel myself on the way down again and I hate knowing that the depression is coming Thanks for responding - it's nice to know that others are living just fine with only one kidney

Autumn, do you have any way to remove people from the petition list? I just noticed that #198 was strictly an ad for Viagra. OTOH, maybe, if it goes into the search engines, even more people will find and sign the petition!

CafePress (where all the stuff is) has these additional items. Any of the current images could be added to these, if anyone is interested: - Kids Dark T-shirt: black, navy, royal, red - Plus Size Scoop Neck T-shirt: white - Plus Size Scoop Neck Dark T-shirt: black - Plus Size V-neck T-shirt: white - Plus Size V-neck Dark T-shirt: black

Wow! I guess I haven't been on the boards for 2 weeks or so I see that I have dozens of PMs to read, many emails to check/answer and I missed at least one person who had ordered an Awareness Bracelet that I never sent My Monday appointment with the surgeon went ok. He took blood/urine and was going to send me for CT scans. That day, as I recall was very cold here with a wind chill of something like -7o I came home and taught my piano students, as usual. Tuesday morning I woke up and my back hurt. I assumed it was from the cold combined with my arthritis. That got worse throughout the day so I called my PCP. Naturally, he was away until the 19th but had a substitute I could see Wed. I didn't want to wait because the pain was excruciating by now and I couldn't get out of chairs or sofa without using the walker I had from surgery to help pull me up. So I called my husband at work and he said he'd come home and take me to the ER. I had been supposed to have handbell rehearsal that night so I called my director and let her know I wouldn't make it. She assumed that Tom (husband) would be home sooner than he was, so she got the associate pastor from my church and they headed to the ER to wait with us. They asked about me at the front desk and were assured that I was there although they didn't see me. I guess they thought I was with the triage nurse or something. So they waited. Then a Melissa O'Connor was called... My people realized it wasn't me and left. Finally, Tom got home - he had really important work to do (sarcastically said!) and I got to the ER about 6:00PM. Last time I was there, they told me I had kidney cancer, so I was hoping that there was no rerun of that experience! The triage nurse let me wait on a gurney instead of one of the hard plastic chairs in the waiting room. Unfortunately, they also wanted blood and urine. My only good arm had been used by the neurosurgeon the day before Luckily the nurse finally got the IV in to my other arm. I guess my veins are a bit better post-Cushing's. No collapses this time. They did CT scans (so I don't have to do my surgeon's ones - YEA!) and XRays and found basically nothing except lung nodules that hadn't grown much since my last scan - say what? I didn't know I HAD lung nodules. I got some percocet and they sent me home with orders to see the sub PCP in 2 days. The percocet didn't do much except make me sleepy/groggy. My days were spent watching TV and sleeping. Even sitting at the computer or the table was too painful. Tom took me to the sub PCP on that Friday and she's sending me to physical therapy. Until yesterday, I didn't drive at all, and the weather has been awful, so I haven't even called about the PT yet. There is still a little pain, and I need the walker to get out of bed, but I'm doing much better. A weird side thing - Tom was driving my car since it's a van and much heavier than his midlife crisis sports car. The van does much better with snow and ice that we had the last couple weeks. One day he got it home, slammed the door - and the window slid down into the door. Somehow it got off the tracks. Luckily the glass didn't break. So that was a bit of a problem and $. No one had ever even heard of this problem before. Anyway, I hope to get to your PMs, emails and whatever ASAP! It feels a bit weird being here - like my baby has grown up, left home and doesn't need me anymore. Can you have Empty Nest Syndrome for message boards? LOL

Ok, this is getting confusing! There are the Got Hump? Shirts now with just a ribbon. Those items start with The Cushie "Got Hump?" in the title. The Cushie SURVIVOR ones have a ribbon on the back that says Cushie Survivor. Those items start with Cushie Survivor "Got Hump?" in the title. There is a dog shirt, just in case, too There are children's items available, too (none in the store yet) - anyone interested in those? See everything at in the Cushie Store

Looks like there's free shipping through Feb 14 of orders over $50 with code VDAYSHIP at checkout * Excludes Custom Postage. Only applies to orders with a United States shipping destination, totaling $50 or more before shipping. Cannot be combined with any other coupons or bulk order discounts. Valid through February 14, 2007, at 11:59 p.m. (PST) The website gets a small percentage of every sale - about $.75 (75 cents), I think Here's way more info that you wanted about shipping and how long it takes to get to various places: http://www.cafepress.com/cp/info/help/shipping.aspx#5. I was looking for a list to see if there any exclusions for international shipping, but I don't see any list of countries. I guess the best way to find out would be to start an order and bail out just before the end. It would probably tell you then if a country was not allowed. I don't think that they'd exclude the UK, though

Amy, we have had a "Cushing's Support Staff" series of shirts for several years. There was one year we had a conference with several husbands who wore those. You can see one of them here Support Staff The small words say "Taking good care of our family and friends"

These are still up from 2002 LOL Remember, if you want the teddy bear or the coffee mug for Valentine's Day, they need to be ordered by: Flat Fee Feb. 2nd Standard Feb. 4th USPS Feb. 5th 2-Day Feb. 7th Next Day Feb. 11th International/Canada Jan. 29th The bear's TShirt looks like: I'm not sure if they'll give away the candy again or not. The coffee mug image is similar but with a larger design: These and other stuff is available in the Cushie Store

Here's another possible back

Unfortunately, to put the ribbon that high up on the back, there was only 4 inches high allotted to that space. It is 10 inches wide, if you wanted to put something off to the side or maybe the web info very small underneath. Of the 4 inches, I made the ribbon about 3.8 inches high. That could be smaller, but it still wouldn't be possible to move the url any lower than the 4 inch limit. If it were a regular back, there would be 10 inches of height to play with - but the ribbon wouldn't be over the hump anymore The web address doesn't have to be on there at all, though.

Good ideas! To put it under the hump would mean that the ribbon would have to be a bit smaller, but that's ok. Other ideas? Image changed to make it higher on the front. How's that for speedy service? LOL

So far on the ribbon magnets - I'd have to get a minimum of 125 but there can be 2 colors and a logo on that.

Here's how the images look on a *few* items http://www.cafepress.com/cushingshelp That neon green looks ghastly! LOL

And a possible front... I can move the web address up like Jen did. Thoughts?

Here's a back sample. Unfortunately, that's as high as I can get the hump using the CafePress site. What do you think?

Jayne and I were just talking about doing something here in the metro DC area for the week (or so) after Cushing's Awareness Day. The week before is also Palm Sunday and that's also an incredibly busy time for me with my handbell ringing. So...if anyone wants to come to the DC area to celebrate, let me know! Anyone who is planning a Cushing's Awareness Day please post here or let me know so I can add it to the newsletter and the main site - and the calendar on here.

Thanks, Jen - I was thinking of doing something like that for the front, then a ribbon on the hump like Amber's tattoo. The question that I have is would people want one that said "survivor" on it or just the ribbon on the hump? If it said survivor and the hump, would you want the year? That would be a little more tricky, like a special order. I could make ones with just the ribbon, just the ribbon and survivor and then a series of years but I could only put those up one at a time, unless I opened a "professional" store which, of course, co$t$ and we don't do that kind of volume to make it worthwhile. I have 2 thoughts on the survivor + year... there could be a week that the number was 2000, then 2001 the next week etc and cycle around. OR they could be more by special order. Like Jen writes that she wants her year, she orders that and writes to me that the order is complete. Then I take the next special request, put that up for awhile, then when that is ordered move on to the next one. I'm more inclined to go with # 1. Then, everyone from the last 52 years could at least get one this year I think I'd start with my year, though, 1987 since I don't know of anyone here earlier than that. I'd guess there's a big jump, too up to about 1996 or so. Any thoughts? Or I'll start collecting year numbers to work on if people want those ~~~~~~~~~~~~~~~~~~~~~ Car magnets - it seems fairly expensive to do the 2 color ones Yellow seems to indicate Support Our Troops. Is there interest for the light blue? An alternative, if you have an inkjet printer that feeds fairly straight through rather than curving the paper around. There is magnetic paper that you can print on but it's a little too thick to curve around in the nonstraight printer because the backing peels off. But, if you want to experiment with printing your own magnets, I could do an image... I'm still looking for a reasonable place to get 2-color ribbons, though. It looks like there would have to be a pre-order at least from what I've seen so far.

http://www.blackwell-synergy.com/doi/abs/1...65.2004.02003.x Clinical Endocrinology Volume 60 Issue 4 Page 470 - April 2004 To cite this article: Maria Alba, Catherine M. Hall, Andrew J. Whatmore, Peter E. Clayton, David A. Price, Roberto Salvatori (2004) Variability in anterior pituitary size within members of a family with GH deficiency due to a new splice mutation in the GHRH receptor gene Clinical Endocrinology 60 (4), 470?475. doi:10.1111/j.1365-2265.2004.02003.x Original Article Variability in anterior pituitary size within members of a family with GH deficiency due to a new splice mutation in the GHRH receptor gene * Maria Alba**Division of Endocrinology, and The Ilyssa Center for Molecular and Cellular Endocrinology, The Johns Hopkins University School of Medicine, Baltimore, MD, USA and , * Catherine M. Hall??Department of Paediatric Endocrinology, The Royal Manchester Children's Hospital, Manchester, UK, * Andrew J. Whatmore??Department of Paediatric Endocrinology, The Royal Manchester Children's Hospital, Manchester, UK, * Peter E. Clayton??Department of Paediatric Endocrinology, The Royal Manchester Children's Hospital, Manchester, UK, * David A. Price??Department of Paediatric Endocrinology, The Royal Manchester Children's Hospital, Manchester, UK and * Roberto Salvatori**Division of Endocrinology, and The Ilyssa Center for Molecular and Cellular Endocrinology, The Johns Hopkins University School of Medicine, Baltimore, MD, USA and * *Division of Endocrinology, and The Ilyssa Center for Molecular and Cellular Endocrinology, The Johns Hopkins University School of Medicine, Baltimore, MD, USA and ?Department of Paediatric Endocrinology, The Royal Manchester Children's Hospital, Manchester, UK Summary objective Mutations in the GHRH receptor (GHRHR) gene (GHRHR) cause autosomal recessive isolated GH deficiency (IGHD), and are usually associated with anterior pituitary hypoplasia (APH) (defined as pituitary height more than 2 SDS below normal). We searched for GHRHR mutations and studied pituitary morphology in three prepubertal sibs with severe IGHD, who were born from consanguineous parents. design We sequenced the 13 exons and the intron?exon boundaries of the GHRHR of the index patient. After identifying a novel mutation, we sequenced the same area in the other family members. In addition, we performed magnetic resonance imaging (MRI) study of the pituitary (at age 8, 4 and 3 years) in the three affected subjects. results The three children were homozygous for a new GHRHR mutation that alters the second base of the invariant 5' splice site (GT) of intron 12 [iVS12 + 2T→A]. The parents and an unaffected sibling were heterozygous for the same change. MRI did not show frank APH (by height criteria) in any of the subjects: pituitary height was normal (5?6 mm, +1?8 SDS) in the oldest sibling, and it was low but not below 2 SDS by age-adjusted criteria in the second (3 mm, −1?4 SDS), and third sibling (2?8 mm, −1?7 SDS). Calculated pituitary volume was below −2 SDS in the youngest patient. conclusions These data demonstrate that pituitary height may fall within 2 SDS from the norm in patients with severe IGHD due to a homozygous GHRHR mutation, and that pituitary size may vary within patients with identical mutations who belong to the same family.

It's nice to see that someone is working on stuff that might be beneficial to us...someday! At least we got a mention

This was in Today's Email Newsletter from http://ott.od.nih.gov/db/abstractdetails.asp?RefNo=1033 Description of Invention: Nuclear receptors are ligand-activated transcription factors that regulate a wide range of biological processes and dysfunction of these receptors can lead to proliferative, reproductive and metabolic diseases, such as cancer, infertility, obesity and diabetes. Nuclear receptors are the second largest class of drug targets and the market for nuclear receptor targeted drugs is estimated to be almost 15% of the $400 billion global pharmaceutical market. Researchers at the National Institute of Diabetes and Digestive and Kidney Disease have isolated a novel protein termed STAMP (SRC-1 and TIF-2 Associated Modulatory Protein) that interacts with the biologically active domains of the coactivators TIF-2 and SRC-1 (J. Biol. Chem. (2002) 51,49256-66) and present data which support a role for STAMP as an important new factor in the glucocorticoid regulatory network. There remains a need for novel therapeutics that specifically block or enhance specific genes and an emerging therapeutic goal is the discovery of agents that modulate co-activators or co-repressors in a tissue specific manner. The invention is a novel protein that plays a key role in modulating transcriptional properties of glucocorticoid receptor (GR)-steroid complexes during both gene induction and gene repression, and is likely to modulate the transcriptional properties of all the steroid receptors including androgen, mineralocorticoid and progesterone receptors. The inventors have shown that ectopically expressed STAMP protein both modulates the EC50 of glucocorticoid receptor-agonist complexes for induced genes and increases glucocorticoid receptor-repressive activity of suppressed genes in a manner that is inhibited by specific siRNAs under physiologically relevant conditions. The modulation of STAMP levels at the cell or organism level could possibly be used as a therapeutic able to modify inappropriate gene expression that occurs in certain diseases or as a result of long-term steroid treatment. Available for licensing are claims directed to compositions which are capable of modulating the GR gene expression in a mammalian cell using DNA, siRNA or antibodies and to methods of shifting a steroid dose-response curve, where less of the steroid needs to be administered because the composition contains the STAMP polypeptide. The novel STAMP functional sequence can be used in a composition of matter claim or as a target that could be regulated by an antibody or perhaps other modulator that would vary the ability of STAMP to either induce or repress the activity of glucocorticoid receptors. Diseases that could be treated include: hypertension, diabetes, cardiovascular disease, osteoporosis, Cushing's Disease as well as any disease requiring chronic steroid treatment such as Rheumatoid Arthritis, Asthma, inflammatory and auto-immune diseases. The present invention provides a broad, flexible IP platform that should be of interest to companies which focus on nuclear receptors as drug target and lead discovery generators, as well as to companies which have the capability to develop STAMP's potential as a therapeutic. Inventors: S. Stoney Simons and Yuanzheng He (NIDDK) Patent Status: DHHS Reference No. E-056-2004/0 -- U.S. Provisional Application No. 60/548,039 filed 26 Feb 2004 PCT Application No. PCT/US2005/006393 filed 25 Feb 2005, which published as WO 2005/082935 on 09 Sep 2005 Licensing Status: In addition to licensing, the technology is available for further development through collaborative research with the inventors via a Cooperative Research and Development Agreement (CRADA). Portfolios: Internal Medicine Internal Medicine-Therapeutics-Cardiology-Other Internal Medicine-Therapeutics Internal Medicine-Other For Additional Information Please Contact: Susan Carson D.Phil. NIH Office of Technology Transfer 6011 Executive Blvd, Suite 325 Rockville, MD 20852-3804 Phone: (301) 435-5020 Email: carsonsu@mail.nih.gov Fax: (301) 402-0220 Web Ref: 1033 Last Updated On: 1/05

The wrist bands are available now, and have been for at least a year or two, from http://cushings-interactive.com/oscommerce2/ Still working on the magnetic ribbons, though. Like the bracelets, that is something I would have to order in quantity and ship out from my home We could put the Amber Tattoo on the back - if she agreed! - but that has the year on it, and we all have different years If Amber agrees, we could do that and take out the year, though...

Cute! I like that I thought you wanted that on the back, by the hump - or not? I see that Cafe Press is back up, too, so the link I posted earlier should work

There are already bracelets available - they've been around for at least a couple years and I've had to reorder them several times. There's a link at the top of every page here that ways "WristBands" and the link is http://www.cushings-interactive.com/oscommerce2/ I haven't yet found a place that is reasonable to do the car magnets yet unless we were to go with one color. I can put any saying that anyone wants on a T-Shirt, etc if you let me know what you want. Right now it looks like the site where the T-shirts are is down or there's something weird going on with the internet. The usual link is http://www.cafepress.com/cp/store/store.as...rt,cushpersonal and I'm not sure what is going to happen, if they went out of business or what