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
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
This arrived in my inbox, and I wanted to share. What preparations have you made? I have a prescription for Tamiflu, but have not had it filled yet. I haven’t had my seasonal flu shot yet, but will get that done soon.
To: Duke University Health System Patients
From: William J. Fulkerson, M.D.
Senior Vice President, Duke University Health System
Date: September 16, 2009
Re: Influenza Preparedness: Advice to our Patients
Dear Duke Patients,
As we approach the official beginning of autumn, we are entering the annual cold and flu season. This year’s flu season is expected to arrive early, stay late and be more intense than the flu seasons we have experienced in the recent past. The H1N1 influenza pandemic (aka “swine flu”) continues to intensify throughout the world, and public health officials fully anticipate a second and third wave of illness similar to what was experienced in the spring of 2009. Given the magnitude of health implications the flu can have on individuals (and their families), Duke Medicine is recommending the following steps to stay well this fall and winter.
Understand the facts about the flu. The H1N1 (aka “swine flu”) and seasonal flu are contagious respiratory illnesses caused by influenza viruses. They are spread mainly from person to person through coughing or sneezing and less commonly by touching a contaminated surface. The circulating strain of H1N1 causes an illness pattern similar in severity and duration to typical seasonal flu in most patients.
Know if you are in a high-risk group for complications from influenza. The high-risk groups for complications from H1N1 and seasonal influenza are similar. The major difference is that pregnant women and younger patients seem to be at a slightly higher risk to contract H1N1 (possibly because older patients have developed immunity to similar viruses over the years). The following are high-risk groups whose Duke health care provider should be contacted immediately if they become ill with influenza like symptoms: children less than 5 years old, pregnant women, adults and children who have chronic illnesses or compromised immune systems, persons aged 65 years or older, residents of nursing homes and other chronic-care facilities.
Understand the symptoms associated with the flu. Seasonal and H1N1flu symptoms are indistinguishable. They include: fever, sore throat, chills, body aches, cough, runny or stuffy nose, diarrhea, vomiting and headache. Please note that many of the recommendations regarding when it is safe to return to work or school are based on knowing your body’s temperature. If you don’t have a thermometer in the house, consider purchasing one now.
Understand when to seek medical care. Most patients recover from the flu completely in a few days and do not require a visit to their health care provider. But it is important to know when you should seek medical care. Flu symptoms typically resolve in 5 days, but if your symptoms persist beyond 5 days, contact your primary care doctor. If you have any of the following potentially life-threatening symptoms while battling the flu, immediately contact your health care provider or go to the closest Emergency Department: difficulty breathing or shortness of breath, pain or pressure in the chest or abdomen, sudden dizziness, confusion, severe or persistent vomiting, flu symptoms that initially improve but then return with cough and fever. Infants should be taken immediately to the Emergency Department if there is a bluish or gray skin color, lack of responsiveness or extreme irritability.
Get a seasonal flu shot! The seasonal flu vaccine is the single best way to avoid getting the seasonal flu. It does not protect you from the H1N1 (aka “swine”) flu, but is highly effective against most strains of the seasonal flu. Duke Clinics will begin offering seasonal flu shots as early as mid-September this year. By obtaining your flu vaccine well before the peak of flu season, you give your body the ability to build immunity to the flu before you are exposed. It takes about two weeks for your body to fully build its defenses after receiving the vaccine.
Consider getting the H1N1 vaccine. This year in addition to the seasonal flu vaccine there will be a separate vaccine for H1N1. This may be a one part or two part vaccine aimed directly at the circulating H1N1 influenza virus. The vaccine is highly recommended (and will be prioritized) for pregnant women, people who live with or care for children younger than 6 months of age, health care and emergency medical services personnel, persons between the ages of 6 months and 24 years old, and people ages 25 through 64 who are at higher risk for 2009 H1N1 because of chronic health disorders or compromised immune systems. Once there is adequate supply of the vaccine, we encourage all patients to get vaccinated. Talk with your health care provider about when you should be vaccinated for H1N1.
If you’re sick, stay home! The flu is spread when an infected individual coughs and sneezes. Once it is in the environment, the rest of us can get from handshakes, by simply being in close contact with someone who is infected, or by touching contaminated surfaces. If you come down with flu-like symptoms, stay home (away from other people) until at least 24 hours after your fever has naturally resolved.
Wash your hands frequently. Frequent hand washing is a simple activity to avoid a multitude of infections – including the seasonal flu, swine flu and the common cold. Wash your hands well using soap and water; alcohol-based hand gels are a good alternative when you are away from a sink. Avoid touching your eyes, nose and mouth, as these are the routes of entry for cold and flu viruses into the body.
“Eat right and sleep tight. Stay hydrated.” Diet and sleep patterns have a profound effect on your body’s ability to fight infection and disease. Eating green, red and yellow fruits and vegetables and sleeping a minimum of 8 hours a night boosts your body’s immune system. A healthy adult needs to drink about 64 ounces of water each day.
Stay calm and don’t panic. Pandemics can be scary times – but rest assured the federal, state and county governments and Duke University Health System are all working together to address this pandemic. Duke Medicine is committed to helping you and your families stay healthy this cold and flu season. Please do not hesitate to visit www.dukehealth.org/flu for updates on the flu season, or contact your health care provider with questions.
William J. Fulkerson, MD