Month: November 2009

Dr. Brian Durie to host a teleconference

Dr. Brian Durie, Chairman and Medical Director of the International Myeloma Foundation, will host a teleconference next week to highlight key myeloma presentations at the upcoming American Society of Hematology Annual Meeting. The teleconference will take place on Monday, November 30th at 11 a.m. ET.

Discussion topics will include:
§ Treating the full cycle of myeloma
§ Pipeline drugs – what’s next and why they’re needed
§ Genetic variations in survival and outcome

Here are the dial-in details for the teleconference:

800.860.2442 (U.S.) or 412.858.4600 (outside of the U.S.)
Pass code: IMF

H1N1 flu that’s resistant to Tamiflu

I just read about a strain of H1N1 flu that’s resistant to Tamiflu. Four of these cases have been reported at Duke Medical Center in Durham, North Carolina.  I wondered if it has possibly infected people in the transplant clinic? A friend had her SCT at Duke one year when the flu was rampant in the transplant clinic.  She said that a few of the patients became quite ill.  She had the flu herself. She recovered and had a second stem cell transplant.

“All four of the North Carolina patients were hospitalized and were very ill with underlying severely compromised immune systems and multiple other complex medical conditions, according to researchers from the Duke University Medical Center. Three of the four died. No details have been released about how the patients caught the resistant virus or whether there was any contact among them.”

Maugh II, T.H. (2009, November 20). Swine flu seems to be trailing off — for now, at least. Retrieved from http://latimesblogs.latimes.com/booster_shots/2009/11/swine-flu-seems-to-be-tailing-offfor-now-at-elast.html

Three Harpsichords

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.

Harpsichord concert

One of the performers, Elaine Funaro, played her new harpsichord (Opus 333). The instrument was built by Richard Kingston. The harpsichord was painted by Durham artist Lisa Creed.

Richard Kingston

Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data

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
a registry

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).

International Myeloma Foundation’s 3rd Annual Comedy Celebration for the Peter Boyle Memorial Fund

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.

Myeloma treatment drug maker Celgene flagged for a buy

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.

http://www.cnbc.com/id/33603726

I’ll be waiting to see what happens during the ASH conference.

Pilot Mountain astronomy observation Saturday Night

Forsyth Astronomical Society public observation at Pilot Mountain
This just in!

Telescope Viewing Saturday Night

Message: Hi,
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

Chip

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.