They fixed my blog. I am staying here. Thanks Google.
Monday, February 9, 2009
Siegfried & Roy: 'The Magic Returns'
I wished I loved in Las Vegas now. There was a former Siegfried & Roy magician that ran the IT section at SAIT. On the Orientation he went and did tricks for us.
Posted by Heather Dugdale at 10:48 AM 0 comments
Sunday, February 8, 2009
Siegfried & Roy
You never know what tidbits you'll find reading HD headline stories. This morning I read about Siegfried & Roy will be doing a Vegas performance March 6th to benefit brain diseases. Curious, I clicked on the link and the brief article mentioned "Portions of the proceeds from their one and only comeback performance will benefit the Lou Ruvo Brain Institute. The institute is a study and treatment center for neurological diseases like Alzheimer's disease, Parkinson's disease, and Huntington's disease." That led me to find out this wonderful facility is planned to open in Las Vegas sometime this year that will help families with neurodegenerative diseases!!The LRBI has partnered with the Hereditary Disease Foundation. Located next to the World Market Center one newspaper article I read said the Institute will provide one-stop shopping: there would be a person, the contact person, friend of the family, that going to provide them with the kind of supporting, loving services they need. Some of those service could include financial and legal guidance for families dealing with these diseases as well as help with social services. Top neurologists from around the world will treat patients with thing like Alzheimer's, Parkinson's, Huntington's, and ALS. But they will also have an eye on the future. "We have no cures for these ailments and the goal of the Lou Ruvo Brain Institute is to pull some of the top researchers in the world around these diseases in order to cure and ultimately prevent them altogether," Institute president and CEO Dr. Zaven Khachaturian explains.So keep this facility in mind for any HD families living in Nevada and also research news! The one fault I found on their website.......under Resources they don't have a link to the HDF or any HD information.....yet!!Lou Ruvo Brain Institute
Keep Memory Alive Foundation
http://www.keepmemoryalive.org/
888 W. Bonneville Ave.Las Vegas,
NV 89106Phone: 702-263-9797/
Fax: 702-260-9797
Toll free phone: 1-888-268-9797
Scientific Advisory Board
http://www.keepmemoryalive.org/
888 W. Bonneville Ave.Las Vegas,
NV 89106Phone: 702-263-9797/
Fax: 702-260-9797
Toll free phone: 1-888-268-9797
Scientific Advisory Board
Posted by Heather Dugdale at 11:27 AM 0 comments
Saturday, February 7, 2009
World Rare Disease Day is being held Feb. 28, 2009
World Rare Disease Day
http://www.rarediseaseday.org/
Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient.People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support.Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.
The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives.
Other main objectives of Rare Disease Day are to:
Raise awareness on rare diseases
Strengthen one voice of patients
Give hope and information to patients
Bring stakeholders closer together
Coordinate policy actions in different countries
Inspire continued growth of the awareness of rare diseases
Get equity in access to care and treatment
Awareness raising events will take place in each participating country. To find out what is happening in your country, click here.
There's not much going on in the US this year, except the below, but this is new........and it's up to people affected by a rare disease, such as HD to spread the word!!!
USA - National Organization for Rare Disorders - NORD Video
http://www.rarediseaseday.org/country/result?country_id=US
This video was created for the 25th anniversary in 2008 of the U.S. Orphan Drug Act. NORD and its Rare Disease Day Partners are very happy to join hands with EURORDIS, the European National Alliances, and others around the world in focusing attention on rare diseases as a public health issue. We look forward to helping make Rare Disease Day an annual global event.
Who can take part?Anyone who wants to - everyone’s invited!
Rare Disease is open to the general public, patient organisations, NGOs and the rare disease community at large. Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at international level and National Alliances at national level. The more participants, the more impact for the Day, and the more we’ll be able to do for patients.
http://www.rarediseaseday.org/
Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient.People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support.Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.
The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives.
Other main objectives of Rare Disease Day are to:
Raise awareness on rare diseases
Strengthen one voice of patients
Give hope and information to patients
Bring stakeholders closer together
Coordinate policy actions in different countries
Inspire continued growth of the awareness of rare diseases
Get equity in access to care and treatment
Awareness raising events will take place in each participating country. To find out what is happening in your country, click here.
There's not much going on in the US this year, except the below, but this is new........and it's up to people affected by a rare disease, such as HD to spread the word!!!
USA - National Organization for Rare Disorders - NORD Video
http://www.rarediseaseday.org/country/result?country_id=US
This video was created for the 25th anniversary in 2008 of the U.S. Orphan Drug Act. NORD and its Rare Disease Day Partners are very happy to join hands with EURORDIS, the European National Alliances, and others around the world in focusing attention on rare diseases as a public health issue. We look forward to helping make Rare Disease Day an annual global event.
Who can take part?Anyone who wants to - everyone’s invited!
Rare Disease is open to the general public, patient organisations, NGOs and the rare disease community at large. Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at international level and National Alliances at national level. The more participants, the more impact for the Day, and the more we’ll be able to do for patients.
Posted by Heather Dugdale at 6:51 PM 0 comments
Trevor is the best adovocate
Today we got an email form Dr. Suchorsky's office. They never ever sent anything until we went to complain now we have an appointment in June. the office emailed and admitted the problem. We are giving my Dad their mail. He can't get a hold of them either.
Posted by Heather Dugdale at 3:24 PM 0 comments
Friday, February 6, 2009
Metropolitan Ballroom
Metropolitan Ballroom
Golden Valley, MN
Be sure to mark your calendars for Saturday, February 28th because you won’t want to miss this FABULOUS event! Silent & live auction, entertainment, dinner, key-note speakers, awards & fellowship!
Contact Information: Leigh Peterson, Regional Director
7362 University Avenue, Suite 212Fridley, MN 55432
lpeterson@hdsa.org
763-502-1407
Golden Valley, MN
Be sure to mark your calendars for Saturday, February 28th because you won’t want to miss this FABULOUS event! Silent & live auction, entertainment, dinner, key-note speakers, awards & fellowship!
Contact Information: Leigh Peterson, Regional Director
7362 University Avenue, Suite 212Fridley, MN 55432
lpeterson@hdsa.org
763-502-1407
Posted by Heather Dugdale at 4:08 PM 0 comments
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