Nov 12, 2009
Posted by Beth on Nov 12, 2009 in Announcements, Health News, News | 0 comments
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).
Jul 27, 2009
Posted by Beth on Jul 27, 2009 in Announcements, General, News | 1 comment
On Saturday, August 22nd , beginning at 2pm, at the Owens Auditorium at the Sandhills Community College, the County Animal Response Team (CART) will be hosting an invaluable event for those owning or caring for pets and/or domesticated animals in Moore County. A free showing of the award-winning documentary, “Katrina Tails,” will be followed by a presentation and discussion about Moore County’s newly-revised Animal Response Plan to be executed during disasters. Call 910-947-2858 for more details.
More information:
GROUNDBREAKING DISASTER PLAN FOR MOORE COUNTY’S ANIMALS
On August 22nd, the County Animal Response Team (CART) will be hosting an invaluable event for those owning or caring for pets and domesticated animals in Moore County. A free showing of the 2008 Accolade Award-winning documentary, “Katrina Tails,” will be followed by a presentation and discussion about Moore County’s newly-revised Animal Response Plan. The event will take place at the Owens Auditorium at Sandhills Community College beginning at 2pm.
Doug Harris, a Katrina victim, remembers being asked to leave his pets behind: “We were informed that buses would be taking everyone to higher ground and we would not be able to take our pets with us,” he said. “The worst was being forced to walk away from my beloved dogs who loved and protected us for years and would never have done that to us for any reason.”
We are all haunted by the TV footage and photos of scared and hungry animals left behind in the wake of Hurricane Katrina. Long after the flood receded, the heartbreak continued as people searched for their lost pets.
Back in 2006, President George W. Bush signed the Pets Evacuation and Transportation Standards (PETS) Act into law.
This landmark legislation requires local and state disaster plans to include provisions for household pets and service animals in the event of a major disaster or emergency.
With more than 358 million pets in the country residing in 63 percent of American households, the PETS Act helps ensure that Americans never again are faced with the choice of abandoning their pet and finding their way to safety or staying with their pet and remaining in a hazardous and potentially life-threatening situation.
Moore County’s Animal Response Team is chaired by Scot Brooks, the County Emergency Manager and Deputy Director of Public Safety. It brings together representatives from the NC Department of Agriculture, the County Department of Animal Operations, the Fire Department, the NC Cooperative Extension Service, the NC Wildlife Resources Commission, the NC Veterinary Alliance, the American Red Cross, the Veterinary Medical Assistance Team, and Moore County’s Pet Responsibility Committee.
Over the past two years, the Team has met and worked on an Animal Response Plan which considers not only pets and service animals, but all domesticated animals in Moore County. It has also included provisions for wildlife.
Plans have been made with Southern Middle School in Aberdeen designating it as a “Co-Located Shelter,” that is, a shelter that accepts both people and their pets.
Meetings have been held with a group of local veterinarians and decisions are being finalized regarding locations for the care and treatment of sick and injured animals in a disaster or emergency.
Contact information for local, State and National animal rescue resources has been compiled for quick access. A plan for a database of local volunteers to help with the animals in an emergency is underway.
The event at the end of August is designed to help residents prepare, plan and stay informed regarding the safety of their pets and animals in a disaster.
Members of the CART will be on hand at the event to answer questions and a number of booths will distribute related information. The Moore County CAMET (Companion Animal Mobile Equipment Trailer), a vehicle designed to quickly enable the setup of an emergency pet shelter will also be on display for the public to see, as will an equine ambulance designed to transport injured horses. Residents may also talk to a CART representative about signing up to be a member of the disaster volunteer pool.
In these uncertain times, there is one thing we can unfortunately be sure of: there will be emergencies and disasters. Animals and humans are profoundly impacted by these unexpected and many times unpredictable events. However, with advance preparation by individuals and government agencies working together within a community, the better everyone is able to effectively respond to the crisis.
For more information regarding the event, please call Animal Services at 910-947-2858.
Mar 15, 2009
Posted by zerofeel on Mar 15, 2009 in Family, Internet, Life, Myeloma, Myeloma Treatment, News | 3 comments
All,
My uncle Darryl Ramsey was recently diagnosed with Stage 3 Multiple Myeloma and was told that he has aprox 1 year to live. However, my uncle feels that Chemo and Radation are a waste of time because he now knows he has been sick with Multiple Myeloma for over 10 years and thinks he is still here today because of the fact that he was the type of person to refuse going to doctors and he for years started jucing and eating better every day. Like most people the first thing my uncle did was a Google search and he found nothing but grimm information. I started www.myelomaforums.com because I wanted him and others like him to have access to information from other people so that him and others like him know about all the best treatments and have access to all the answers. However, the hardest part of getting a sucessful forum started is getting people and content. I am here to ask everyone to please sign up with www.myelomaforums.com as well because the more your stories are out there the more people we can help.
Thanks,
Andy
P.S. Beth your’re a sweetheart and thanks for the kind email and willingness to help.
Feb 15, 2009
Posted by Beth on Feb 15, 2009 in Myeloma, Myeloma Treatment, News | 1 comment
I’m putting my links to blogs into a feed aggregator. If your blog has an RSS feed and you’d like to have it on the list, let me know. Just us the contact form. Don’t forget to tell me what the URL for your valid RSS feed is.
http://www.myelomablogs.org/?type=archive
If you don’t have a blog or an RSS feed, why not set up one at healthblogs.org?
Find out what others are doing: myeloma treatment, chemo, coping
Jan 15, 2009
Posted by Beth on Jan 15, 2009 in Cancer, Duke, Life, Myeloma, Myeloma Treatment, News, Southern Pines, Stem Cell Transplant | 15 comments
I don’t have a lot to blog about here because my myeloma has been stable since last fall. There’s not much there at all. If you don’t have myeloma, I have only a little bit more than you do.
These labs were done 12/08/2008
IFE SERUM
(2) MONOCLONAL IgA-LAMBDAS DETECTED BY IFE.
SPE M-SPIKE 1 0.17 g/dL
SPE M-SPIKE 2 0.12 g/dL
IG FREE LIGHT CHAINS SERUM
Reference
IG FREE LIGHT CHAIN KAPPA *0.16mg/dL [0.33-1.94]
IG FREE LIGHT CHAIN LAMBDA 1.85mg/dL [0.57-2.63]
IG FLC KAPPA/LAMBDA RATIO *0.09 [0.26-1.65]
IMMUNOGLOBULIN PROFILE
IMMUNOGLOBULIN G *374mg/dL [588-1573]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN A *415mg/dL [46-287]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN M *31mg/dL [57-237]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN E 13 IU/mL [4-269]
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