We went to a concert Friday night in Chapel Hill that featured three harpsichords! The program included music by Bach and a local composer named Edwin McLean. I really enjoyed McLean’s music, and will be looking for a CD.
Subject: Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data
The Office of Rare Diseases Research, National Institute of Health, is sponsoring a workshop entitled “Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data,” which will be held in the DoubleTree Hotel in Bethesda, Maryland, on January 11-12, 2010.
The workshop objective is to discuss the development of an infrastructure for an internet-based platform with common data elements utilizing a federated rare disease registry able to incorporate:
1. Existing rare disease registries
2. Patient organizations with no registry looking to establish one
3. Patients with no affiliation with a support group looking to belong to
The expected outcome of the workshop is to gain acceptance of the concept of a federated rare disease patient registry and participation in creating this patient registry from as many curators of patient registries and other stakeholders as possible. Participating stakeholders will discuss harmonizing standardized common data elements, vocabulary, and open source software to enable the exchange of data and information to facilitate research collaborations. The purpose of this effort is to establish a rare disease registry to benefit the rare disease patient and research communities.
A link to the draft agenda is available at the bottom of the registration page http://www.rarediseases.info.nih.gov/patient_registries_workshop/addcontact.aspx
For additional information please contact: Yaffa Rubinstein (ORDR), 301-402-4338.
Sign Language Interpreters will be provided. Individuals with disabilities who need reasonable accommodation to participate in this event should contact Yaffa Rubinstein (ORDR), 301-402-4338 and/or the Federal Relay (1-800-877-8339).
Ray Romano hosted the IMF’s third annual Comedy Celebration for the Peter Boyle Memorial Fund a few days ago. I’m so glad to see the IMF getting these big names to help raise money for research. Every life lost to myeloma is an important one, which is why these people are giving their time and lending their names to this cause. Read more at www.myeloma.org.
I really respect and admire the people at the IMF. I’ve been to three of the patient and family seminars and recommend them to anyone I meet who has myeloma or cares for someone with myeloma. I hope you’ll make a contribution so the IMF can find a cure and continue to educate patients and their families.
Probably most of us who’ve had treatment for our myeloma have been prescribed one of the drugs manufactured by Celgene. Celgene makes Revlimid® (lenalidomide) and Thalomid® (thalidomide).
That really annoying guy on TV, Jim Cramer (Mad Money, CNBC), says it’s on his list of stuff to buy. According to the CNBC site:
So when do you buy CELG? Cramer said that investors could wait until the annual American Society of Hematology (ASH) meeting on Dec. 5, where Celgene is expected to present “some terrific Revlimid data.”
“I wouldn’t pull the trigger on this trade until the week before the conference,” Cramer said.
I’ll be waiting to see what happens during the ASH conference.
Forsyth Astronomical Society public observation at Pilot Mountain
This just in!
Telescope Viewing Saturday Night
Just wanted to let you know there will be an astronomy observation
Saturday night Nov 7 on top of Pilot Mt. hope you can make it.
Check status at http://fas37.org
I have been to one of these, and it was awesome! I hope to be able to make it this time, too, although only if I recover enough from this cold. Get there if you can. There’s nothing like seeing the moon and various planets “up close” from Pilot Mountain.
The last few appointments I’ve had at the Bone Marrow Transplant Clinic, I’ve had to wear a mask into the facility. Everyone has always had to wash their hands before entering, but the masks are a new thing. It’s meant to protect the patients whose immune systems have been wiped out or weakened by high dose chemo. A few days ago when I was there, I saw a woman walk up to the desk to check in and heard her say, “I think I might have the flu.” They whisked her off to an exam room so she wouldn’t be putting others at risk. The first thing I wondered was why didn’t she call ahead and ask if she should show up for her appointment? She could have rescheduled. I noticed that they sanitized the desk top after she was gone, and I imagine they probably had to do the same with the exam room.
It seems like the flu (seasonal and H1N1) is getting all the attention lately. Have a look at this article to take your mind off of it all: Don’t Be a Statistic
Ben had an auto accident last night. It’s amazing that he was able to get out of this car. He might make light of it, but it appears to me to have been a pretty serious accident. He’s finally asleep, so we’re sitting here in the dark in case he wakes up and needs anything.
He’s being such a trooper.
Does anyone recognize this spider? It was on my back yard fence last weekend.
Sept. 29, 2009: I found out that this is a Silver-backed Argiope.
Is it even a spider? In the photo (from my phone), I can’t distinguish 8 legs.
One spider I found in my front yard is a black widow, I’m pretty sure. I didn’t handle it. I captured it in a jar and then let it go in some woods.
Cell phone cameras are really handy, but the image quality isn’t so great.
Southern Pines North Carolina spiders