Today is Rare Disease Day

The National Organization for Rare Disorders (NORD) is doing its best to get attention to the 30 million Americans that have a rare disease. Speaking as one (Adenoid Cystic Carcinoma is a rare cancer), I tip my hat to their efforts. Here is the website:
http://rarediseaseday.us/

One of the goals they have is to create a rare disease physician database, and they would like your help: http://rarediseaseday.us/take-action-now/physician-database/. (Oh, I so hope that they involve a librarian or two in the creation of that critter!) It would be very useful for a newly diagnosed ACC person to have such a database to use to help locate someone familiar with the progression patterns of this cancer, rather than be told by their caregiver that they are cancer-free and have the horrible surprise of its return 5-10-15 years later. (I am pretty lucky that no one has fed me the line of 'cancer-free'.)

You are able to post your story to their Facebook or Twitter site, as well as their video project http://rarediseaseday.us/take-action-now/video-project/ . We might get a few more contacts with some other ACC folks out there through this effort - and any time is a good time when we can link up with others that have this rare disease .

Adenoid Cystic Carcinoma in the news

This story comes from a close-to-home source, the Omaha World-Herald:
One couple's cancer conversation http://www.omaha.com/article/20110217/LIVEWELL01/702189977/1161. Chuck Offenberger of Clarinda, Iowa was first diagnosed with lymphoma, and went through treatment. Then his wife, Carla, was diagnosed with Adenoid Cystic Carcinoma. After her radiation treatments, Chuck's cancer came back, then was treated again.
I am sending all good wishes to this couple for what they have been through, and wishing them many happy days not involved with cancer at all.

A fellow cancer fighter needs funds - clinical trial care is a SUCCESS!

Jeanne Sather, author of the Assertive Cancer Patient blog (http://assertivecancerpatient.com) is currently undergoing treatment through a clinical trial - and it is working (thank goodness!). She is officially in remission, thanks to Genentech's TDM-1. However, she is about $100,000 short to cover her care over the next couple of years, which includes flying back and forth from Seattle to California for her treatments. She is asking for donations through her blog: Jeanne's Piggy Bank is Empty http://assertivecancerpatient.com/2010/11/jeannes-piggy-bank-is-empty-2-1-1.html. Information on how to donate is located here: http://assertivecancerpatient.com/2010/11/jeannes-piggy-bank-is-empty-how-to-donate.html . Please consider donating to her cause.

Catching you up on the mysterious contents of "The Box"

I hope you have figured out now that I was picked as a winner in the BoingBoing contest.  I really REALLY wanted to make a big deal out of the box opening - had alerted librarian bloggers to be on the ready, even talked to our PR department at the university. In the end, it is probably better that I didn't open the box on the Daily Show as I had hoped (it is on my Bucket list, after all, to meet Jon Stewart). We made the best of things by opening it up in the coolest place I know - the McGoogan Library of Medicine. I took photos and video of the event - photos will be on my Flickr account and in the BoingBoing pool, and I will post the url for the video as soon as I get it edited (thanks to Stuart Dayton, artist of most of the things in the photo on the right, for running the iPhone video production!)

Things that the box contained included (of which I am sure there are GREAT stories): a Seagate Freeagent (with power supply only); a PowerPak by Technocel (minus the interchangeable tips), which also happens to be a 2010 CES Innovations Award Winner; a new in the package Dexim leather iPhone case (excellent - it is Husker red, but I bet Dexim has another name for it); a Dreamgear Elmo iPhone silicone case out of the package (this caused the most excitement in the crowd); and a beautiful black and green, though sadly empty, iPad case that has no evident brand (I consider this my 'hope case', and someday should have an iPad to fill it nicely.)

There were collectibles in there as well. A vintage Star Wars:Star Warriors board game (circa 1987, if I understood the date correctly, so it was released when we lived in Germany); a Fonas TRI-1 electronic handheld game (found a photo of it at the Handheld Museum - it came out the year I graduated high school, only a year after I had my first handheld calculator - we thought we were pretty cool back then...); a Star Wars figure (omg, searching for a photo of this is driving this librarian crazy with the limitations of the Internet - finally found this database, but still lost-let me know if you recognize it); a Budweiser leather cigarette and lighter holder (made to fit on a belt, but doesn't look as if it was ever used-nice to see since I am from Missouri too); Continental Airlines earphones (I doubt they are this pair) and a brass jack floating around in the box might have been intended for them, since they have the two-prong proprietary jack;  a 189a Brenda Blender card (from the 5th series of the Garbage Pail Kids, actually stuck to the packing tape on the inside of the box). Three additional items that caused more puzzlement than wonderment in the crowd: an Energizer tea light with globe (must have been a promotional item - not on their site), a blue Mini Mag Lite, and a plain white envelope, with "1 of 3" written on it.

Feeling like this was the start of a teen movie, I opened the envelope to find a portion of a QR barcode. So, I am sorry - the mystery is not solved, it only goes deeper. If you are "2 of 3", or "3 of 3", can we get together and find out the QR code's landing spot? In the meantime, I am going to upload the photos and video, and smile about the good time I had over the past week. What a way to to end my 49th year and keep my mind off of daily reminders of cancer treatment side effects. I am starting my first year of certified antiquity by being a tad cooler than I have ever been before, maybe even to my kids (I know, that is a stretch). Thanks to my friends and coworkers and blog and Facebook readers for putting up with my sophomoric excitement at winning a box of cool stuff. And thanks for the memories, Boing Boing! Here's to many more years for the both of us.

The box has been opened!

And it was full of cool things. I will have a complete inventory plus video and stills of the contents. Unfortunately, I got home to find number one daughter getting ready to go to Naka-Kon in Kansas City http://naka-kon.com/, and number one son heading off somewhere else, and number one husband wanting some dinner. After everything is sorted out, it will be back to the box, I promise.

The question of "What's in the box?" will be answered today

At 3pm Central Time, I will open the box and video capture its contents. This surprise is thanks to Boing Boing awarding me one of their "What's in the box?" prizes. Stay tuned!

The new arrival is here!!!

Not a puppy, nor a mid-life baby, but a mysterious box of prizes from Boing Boing: http://boingboing.net/2011/02/08/thebox.html. I have the enormous responsibility of opening this box up and showing the contents to all of those folks that entered the contest with me, plus the world beyond. I am tweaking a project to make this so. In the mean time, join me in guessing what is in the box that now tempts me in person! Stay tuned, and I will let you know when to expect the grand opening.

Adenoid Cystic Carcinoma in the news

1. Jessica Roark passed away in August - there are several posts about her story on this blog. Her parents have been dealing with her affairs, including her student loans, since that time. Their story on how the loans have finally been resolved was on ABC:
College Loan Forgiveness: When Student Dies, Should Parents Have to Pay?
http://abcnews.go.com/Business/college-loan-forgiveness-student-dies-parents-pay/story?id=12886093
I am so sorry to hear that her parents have had to not only go through their terrible loss, but deal with such a stressful time from Wells Fargo Bank.

2. An announcement of an open access research article:
Combined treatment of adenoid cystic carcinoma with cetuximab and IMRT plus C12 heavy ion boost: ACCEPT [Acc, Erbitux and particle therapy]
The article is in BMC Cancer: http://www.biomedcentral.com/1471-2407/11/70
The research is led by a team from the University of Heidelberg. I checked to see if their study is listed in Clinical Trials. gov - and found it (though it is not yet open to recruiting subjects):
http://clinicaltrials.gov/ct2/show/NCT01192087

Contacts for the study are listed, as well as a really good reading list (down towards the bottom of the page) on research that has been published on treating this rare cancer.

Some things gone, but expecting a new arrival.

I have had many things go away in my life - not all of them good, nor bad, just gone. So I really look forward to the new arrivals. My boyfriend-turned-husband - he was a very nice surprise arrival, thanks to his taking leave and visiting his grandparents, which were also my neighbors. My kids - those were two great new arrivals. My jobs over the years - seemed like a job opening appeared about the time I was ending a grant job, opening new vistas in librarianship and technology for me to play in each time I accepted a new position. Then, of course, the whole cancer episode, followed quickly by the craniectomy - lost some things, but strength and friendship arrived in droves (um, can strength be measured in 'droves'?)
I am expecting another new arrival soon - not sure when it will be coming, but it is sure fun to anticipate. Stay tuned.

Adenoid Cystic Carcinoma in the news

As seen in News from the Dedham (Mass.) Transcript:
http://www.dailynewstranscript.com/features/x1531101/Dedham-Square-Scoop-Feb-3-2011

Songs of Love  - Warm your heart with at a special Valentine’s event hosted by Voicewize & Discover Music and Art to raise awareness for the Adenoid Cystic Carcinoma Research Foundation (ACCRF). Performance by voice students and valentine card making for kids and their parents. Catch a preview of “Hearts from Amy” a unique heart pendant specially designed by Diana Gaikazova in memory of Dedham resident, Amy Counihan, with a percentage of the proceeds will be donated to ACCRF. Saturday, Feb. 12, at 5:15 p.m. at Paradise Café, 565 High Street. Free admission.


Cheeky Librarian again here - if someone has a link to an online source for the Hearts from Amy pendant, please add it in the comments, so folks can find it and buy it in time for Feb. 14. Thanks!