There are many different ways to follow the LFA online. Wanted to share some of them with you.
Facebook
Join the LFA's cause in Facebook.
MySpace
Follow the LFA on MySpace.
Twitter
Follow the LFA on Twitter.
If you want to join in the discussion, then visit the LFA's message boards, and join the more than 4,200 users from around the world who are there to offer advice, support, and encouragement 24/7.
And finally, stay in touch with the latest happenings in the lupus community when you sign up to receive LFA's free enewsletter.
Showing posts with label message boards. Show all posts
Showing posts with label message boards. Show all posts
July 27, 2009
February 11, 2009
"Zero in 50 ... What?!"
In the January 2009 Lupus Living enewsletter, we challenged you to share with us your ideas for trying to raise awareness about lupus, as part of the "Zero in 50" campaign.
The LFA received an impassioned video from "the LEEP Chat Channel," a young woman who is living with lupus. After reading that there had been no new drugs in 50 years, she was compelled to respond, and take action. Watch her video.
What a great video!
So that got us thinking. Are there any other budding filmmakers / videographers out there? If so, we'd love to hear from you. Send us links to your video clips, and/or email your thoughts to us at 50years@lupus.org.
You can also join the discussion on our message boards and give us your suggestions.
The LFA received an impassioned video from "the LEEP Chat Channel," a young woman who is living with lupus. After reading that there had been no new drugs in 50 years, she was compelled to respond, and take action. Watch her video.
What a great video!
So that got us thinking. Are there any other budding filmmakers / videographers out there? If so, we'd love to hear from you. Send us links to your video clips, and/or email your thoughts to us at 50years@lupus.org.
You can also join the discussion on our message boards and give us your suggestions.
September 29, 2008
LFA Message Boards Reach Milestone; More than 2030 Registered Users Are Online
Since their launch February 8, 2008, the LFA message boards have really taken off and now claim more than 2030 registered users. The boards provide an opportunity for individuals to reach out and seek answers to questions about living and coping with lupus, as well as support one another in an understanding and caring environment. To access our message boards, go online to http://messageboards.lupus.org/.
Discussion categories include Recently Diagnosed with Lupus, Lupus Treatments, Men & Lupus, and Coping with Lupus. Based on user feedback, two new categories were recently added: Disability, Insurance and Social Security Issues, and Lupus in the News. In addition, people from all over the world come to LFA’s message boards, from places as far away as Romania, Malaysia, the Netherlands, Iceland, Australia, and Germany.
When you have some time, visit http://messageboards.lupus.org/ and read some of the threads. Or better yet, join the discussion.
You’ll understand why it’s so important that we continue to raise the public's awareness about the devastating effects of this disease.
Discussion categories include Recently Diagnosed with Lupus, Lupus Treatments, Men & Lupus, and Coping with Lupus. Based on user feedback, two new categories were recently added: Disability, Insurance and Social Security Issues, and Lupus in the News. In addition, people from all over the world come to LFA’s message boards, from places as far away as Romania, Malaysia, the Netherlands, Iceland, Australia, and Germany.
When you have some time, visit http://messageboards.lupus.org/ and read some of the threads. Or better yet, join the discussion.
You’ll understand why it’s so important that we continue to raise the public's awareness about the devastating effects of this disease.
September 19, 2008
Lupus Foundation of America's "Healthy Aging & Lupus" Chat Transcript Posted Online
Morning everyone ...
Just a few lupus-related items to share with you.
"Healthy Aging & Lupus" Chat Transcript Posted Online
First, thanks to everyone who attended the "Healthy Aging & Lupus" webchat hosted by Dr. Ronenn Roubenoff on Wednesday. It went very well. A copy of that chat transcript has now been posted online.
And, we hope you will join us for the October 8, 2008 webchat. The topic is "Reproductive Health & Lupus," and it's hosted by Dr. Bonnie Bermas. Mark your calendars for that.
Fall 2008 issue of Lupus Now magazine is available
In the new Fall 2008 issue of Lupus Now, Positive Makeup introduces our readers to Miss Nicole Paxson, who was diagnosed with lupus at age 12. “I’m a firm believer that things happen for a reason,” she says. “Find out what that reason is, and find something you’re passionate about.” Nicole’s passion is her cosmetics company.
Ask anyone about their lupus medications and they’ll probably tell you it’s a true "love-hate” relationship. In this feature article, Tough Medicine acknowledges that, at one time or another, just about everyone with lupus has dreamed of tossing all their meds right down the drain.
In the feature article Baby Steps you’ll meet people who have completed their families in a variety of ways -- from traditional pregnancy to adoption to surrogacy when lupus prevented a pregnancy. The end result is what matters: a child to love, no matter how he or she became part of the family!
So, there’s your sneak peek at what’s in store in this fifth anniversary issue of Lupus Now. We hope you enjoy it!
LFA Message Boards Continue to Grow
As of this morning, there are 1964 registered users for the LFA Message Boards. Which is fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.
That's your lupus scoop from my end. I hope everyone has a great weekend.
Until next time, Wick
Just a few lupus-related items to share with you.
"Healthy Aging & Lupus" Chat Transcript Posted Online
First, thanks to everyone who attended the "Healthy Aging & Lupus" webchat hosted by Dr. Ronenn Roubenoff on Wednesday. It went very well. A copy of that chat transcript has now been posted online.
And, we hope you will join us for the October 8, 2008 webchat. The topic is "Reproductive Health & Lupus," and it's hosted by Dr. Bonnie Bermas. Mark your calendars for that.
Fall 2008 issue of Lupus Now magazine is available
In the new Fall 2008 issue of Lupus Now, Positive Makeup introduces our readers to Miss Nicole Paxson, who was diagnosed with lupus at age 12. “I’m a firm believer that things happen for a reason,” she says. “Find out what that reason is, and find something you’re passionate about.” Nicole’s passion is her cosmetics company.
Ask anyone about their lupus medications and they’ll probably tell you it’s a true "love-hate” relationship. In this feature article, Tough Medicine acknowledges that, at one time or another, just about everyone with lupus has dreamed of tossing all their meds right down the drain.
In the feature article Baby Steps you’ll meet people who have completed their families in a variety of ways -- from traditional pregnancy to adoption to surrogacy when lupus prevented a pregnancy. The end result is what matters: a child to love, no matter how he or she became part of the family!
So, there’s your sneak peek at what’s in store in this fifth anniversary issue of Lupus Now. We hope you enjoy it!
LFA Message Boards Continue to Grow
As of this morning, there are 1964 registered users for the LFA Message Boards. Which is fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.
That's your lupus scoop from my end. I hope everyone has a great weekend.
Until next time, Wick
August 05, 2008
Lupus Foundation of America Message Boards Adds New Category: Disability, Insurance and Social Security Issues
Morning everyone ...
Sorry "On the Road to a Cure" has been silent for several days. Apparently Blogspot.com inadvertently flagged this blog as a "spamming blog." As a result, the blog was locked down until a review was done to make sure it was legit. And now we're back online.
Wanted to give another plug for our message boards, as we have a new category. But first, let me share this with you. As of this morning, there are more than 1620 registered users for the LFA Message Boards. Which is awesome. If you haven't joined the boards yet, you don't know what you're missing. Get in on the action now!
Join the LFA message boards today.
We have added 1 new category -- "Disability, Insurance and Social Security Issues." The reason we added this category is because we noticed a lot of people were inquiring about Social Security Disability. The main question being asked was "How do I apply?" Plus, we wanted to create a space where you could share your advice and experiences, about topics like "what to do if you're having problems with your insurance," or "what do you do if you've been denied disability benefits by Social Security?"
We hope you'll join us on the message boards.
Until next time, Wick
Sorry "On the Road to a Cure" has been silent for several days. Apparently Blogspot.com inadvertently flagged this blog as a "spamming blog." As a result, the blog was locked down until a review was done to make sure it was legit. And now we're back online.
Wanted to give another plug for our message boards, as we have a new category. But first, let me share this with you. As of this morning, there are more than 1620 registered users for the LFA Message Boards. Which is awesome. If you haven't joined the boards yet, you don't know what you're missing. Get in on the action now!
Join the LFA message boards today.
We have added 1 new category -- "Disability, Insurance and Social Security Issues." The reason we added this category is because we noticed a lot of people were inquiring about Social Security Disability. The main question being asked was "How do I apply?" Plus, we wanted to create a space where you could share your advice and experiences, about topics like "what to do if you're having problems with your insurance," or "what do you do if you've been denied disability benefits by Social Security?"
We hope you'll join us on the message boards.
Until next time, Wick
July 28, 2008
Lupus Foundation of America Updates: Message Boards & Walk for Lupus Now
Hey everyone ...
Hope you had a great weekend. Wanted to share a few things with you this morning.
LFA Message Boards Continue to Grow
As of this morning, there are more than 1560 registered users for the LFA Message Boards. Which is fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.
You may have noticed we have added 2 new categories -- "Welcome / Introductions" and "Lupus in the News." We've also tweaked a few others.
Couple of interesting things we've noticed. First, more teens are finding our boards. As are more people in the Armed Forces. And our international friends are finding us as well. Australia, the United Kingdom and Malaysia have been representin' for a while ... and we can now add Romania to the mix.
Welcome to everyone!
Walk for Lupus Now
LFA's Fall Walk season will begin in September. Money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Mark your calendars for the upcoming Walks.
Chicago, IL -- Saturday, September 6, 2008
Hobart, IN -- Saturday, September 13, 2008
Hope you had a great weekend. Wanted to share a few things with you this morning.
LFA Message Boards Continue to Grow
As of this morning, there are more than 1560 registered users for the LFA Message Boards. Which is fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.
You may have noticed we have added 2 new categories -- "Welcome / Introductions" and "Lupus in the News." We've also tweaked a few others.
Couple of interesting things we've noticed. First, more teens are finding our boards. As are more people in the Armed Forces. And our international friends are finding us as well. Australia, the United Kingdom and Malaysia have been representin' for a while ... and we can now add Romania to the mix.
Welcome to everyone!
Walk for Lupus Now
LFA's Fall Walk season will begin in September. Money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Mark your calendars for the upcoming Walks.Chicago, IL -- Saturday, September 6, 2008
Detroit, MI -- Saturday, September 6, 2008
Piqua, OH -- Saturday, September 6, 2008
Hobart, IN -- Saturday, September 13, 2008
Des Moines, IA -- Saturday, September, 13, 2008
Baltimore, MD -- Saturday, September 13, 2008
Nashville, TN -- Saturday, September 13, 2008
Baltimore, MD -- Saturday, September 13, 2008
Nashville, TN -- Saturday, September 13, 2008
June 25, 2008
Updates Coming to LFA Message Boards, Other Lupus News to Note
Good morning everyone ...
Lots going on today. So before I jump into the fray, I wanted to share some lupus news with you.
LFA Message Boards Grow; Updates Coming
As of this morning, there are more than 1260 registered users for the LFA Message Boards. Which is totally fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.
Also wanted to share that some new categories are coming to the message boards. You'll start to notice some changes over the next week.
Lupus Now Magazine Needs Your Help!
When you have an unpredictable disease like lupus, it can be comforting to know that vast stores of medical information and people who really get what you’re going through are just a couple of mouse clicks away on the Web.
In the "Opining Online" column in the Fall 2008 issue of Lupus Now, we want to print your answers to this question:
"What's the best advice you can give a person with lupus who’s applying for SSDI benefits?"
Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Advice for SSDI Benefits" in the subject line of your email. We'll print as many of the responses as we can.
Your deadline is July 15!
That's all the lupus scoop from my end. Until next time, Wick
Lots going on today. So before I jump into the fray, I wanted to share some lupus news with you.
LFA Message Boards Grow; Updates Coming
As of this morning, there are more than 1260 registered users for the LFA Message Boards. Which is totally fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.
Also wanted to share that some new categories are coming to the message boards. You'll start to notice some changes over the next week.
Lupus Now Magazine Needs Your Help!
When you have an unpredictable disease like lupus, it can be comforting to know that vast stores of medical information and people who really get what you’re going through are just a couple of mouse clicks away on the Web.
In the "Opining Online" column in the Fall 2008 issue of Lupus Now, we want to print your answers to this question:
"What's the best advice you can give a person with lupus who’s applying for SSDI benefits?"
Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Advice for SSDI Benefits" in the subject line of your email. We'll print as many of the responses as we can.
Your deadline is July 15!
That's all the lupus scoop from my end. Until next time, Wick
May 27, 2008
Medication Management & Lupus -- the Wed., May 28 Webchat at the Lupus Foundation of America
Morning all.
Wanted to give you a reminder about the Lupus Foundation of America's Webchat this Wednesday afternoon, May 28, at 3 p.m. Eastern Time.
Dr. Joan T. Merrill, the Medical Director of the Lupus Foundation of America, will serve as the guest expert for the Medication Management & Lupus chat.
Joan T. Merrill, M.D., is currently Head of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation (OMRF), OMRF Professor of Medicine at the University of Oklahoma Health Sciences Center and Assistant Professor of Medicine at Columbia University in New York City. She received her medical training at Cornell University Medical College, New York, NY, followed by an internship and residency at St. Luke’s/Roosevelt Hospital Center, a fellowship in rheumatology at NYU Medical Center and a basic research fellowship in the Department of Pediatrics at Columbia University.
Dr. Merrill’s research focus is the study of genetics and pathophysiology relevant to atherosclerosis risk in lupus and antiphospholipid syndrome, for which she has received multiple foundation and NIH grants. She has numerous publications in journals such as the Journal of Immunology, the Journal of Clinical Rheumatology, and the New England Journal of Medicine. She is a sought-after speaker at clinical symposia both nationally and internationally.
Dr. Merrill is a member of the Lupus Foundation of America’s Medical Scientific Advisory Council. She is the co-chair of the American College of Rheumatology’s Study Group and member of the Food and Drug Administration’s Arthritis Drugs Advisory Committee, in addition to many other active professional appointments.
Wanted to give you a reminder about the Lupus Foundation of America's Webchat this Wednesday afternoon, May 28, at 3 p.m. Eastern Time.
Dr. Joan T. Merrill, the Medical Director of the Lupus Foundation of America, will serve as the guest expert for the Medication Management & Lupus chat.Joan T. Merrill, M.D., is currently Head of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation (OMRF), OMRF Professor of Medicine at the University of Oklahoma Health Sciences Center and Assistant Professor of Medicine at Columbia University in New York City. She received her medical training at Cornell University Medical College, New York, NY, followed by an internship and residency at St. Luke’s/Roosevelt Hospital Center, a fellowship in rheumatology at NYU Medical Center and a basic research fellowship in the Department of Pediatrics at Columbia University.
Dr. Merrill’s research focus is the study of genetics and pathophysiology relevant to atherosclerosis risk in lupus and antiphospholipid syndrome, for which she has received multiple foundation and NIH grants. She has numerous publications in journals such as the Journal of Immunology, the Journal of Clinical Rheumatology, and the New England Journal of Medicine. She is a sought-after speaker at clinical symposia both nationally and internationally.
Dr. Merrill is a member of the Lupus Foundation of America’s Medical Scientific Advisory Council. She is the co-chair of the American College of Rheumatology’s Study Group and member of the Food and Drug Administration’s Arthritis Drugs Advisory Committee, in addition to many other active professional appointments.
We certainly hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.
After the chat, you are invited to continue the discussion in our message boards.
As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.
May 16, 2008
Lupus News to Note
Hey everyone ...
Have a busy day planned here today. So before I jump into it, I wanted to share with you some lupus news to note.
Transcript from Wed.'s chat posted online
Wanted to thank everyone who attended Wednesday chat on "Being Newly Diagnosed with Lupus." It went really well. The transcript from that chat has now been posted online. You can read it here.
Help the LFA Improve Its Webchats -- Take This Survey!
With just a few moments of your time, you can help the LFA improve its Webchats. We'd like to have your feedback: what's working, what could be better, and more.
Take the survey now!
Walk for Lupus Now
LFA's Walk season is well underway. Money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Here are some Walks taking place this weekend.
Hot Springs, AR -- Saturday, May 17, 2008
St. Petersburg, FL -- Saturday, May 17, 2008
Oklahoma City, OK -- Saturday, May 17, 2008
New York City, NY -- Sunday, May 18, 2008
LFA Message Boards Reach Milestone
As of this morning, there are 1001 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
That's all the scoop from my end. I hope you have a great weekend.
Until next time, Wick
Have a busy day planned here today. So before I jump into it, I wanted to share with you some lupus news to note.
Transcript from Wed.'s chat posted online
Wanted to thank everyone who attended Wednesday chat on "Being Newly Diagnosed with Lupus." It went really well. The transcript from that chat has now been posted online. You can read it here.
Help the LFA Improve Its Webchats -- Take This Survey!
With just a few moments of your time, you can help the LFA improve its Webchats. We'd like to have your feedback: what's working, what could be better, and more.
Take the survey now!
Walk for Lupus Now
LFA's Walk season is well underway. Money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Here are some Walks taking place this weekend.Hot Springs, AR -- Saturday, May 17, 2008
St. Petersburg, FL -- Saturday, May 17, 2008
Oklahoma City, OK -- Saturday, May 17, 2008
New York City, NY -- Sunday, May 18, 2008
LFA Message Boards Reach Milestone
As of this morning, there are 1001 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
That's all the scoop from my end. I hope you have a great weekend.
Until next time, Wick
May 14, 2008
Join the Lupus Foundation of America's Webchat Today at 3 p.m. Eastern, Then Take The Discussion To Our Message Boards
Morning everyone ...
Wanted to share a few things with you.
Webchat Today at 3 p.m. Eastern
As a reminder, today at 3 p.m. Eastern is the "Being Newly Diagnosed with Lupus" Webchat, hosted by guest expert Dr. Don Thomas. We hope you can join us.
As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.
Help the LFA Improve Its Webchats -- Take This Survey!
Whether or not you have attended one of our chats, we would love to know your thoughts! With just a few moments of your time, you can help the LFA improve its Webchats. We'd like to have your feedback: what's working, what could be better, and more.
Take the survey now!
LFA Message Boards
As of this morning, there are 986 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
LFA Partners with CaringBridge
The LFA wants to help you stay in touch with family members and friends. Now, in partnership with CaringBridge, you can stay connected with your personal and private journal, guestbook and photo album -- all in one place -- using CaringBridge’s personalized website design.
It’s easy to set up your own website -- simply visit http://www.caringbridge.org/lupus and follow the simple steps.
Until next time, Wick
Wanted to share a few things with you.
Webchat Today at 3 p.m. Eastern
As a reminder, today at 3 p.m. Eastern is the "Being Newly Diagnosed with Lupus" Webchat, hosted by guest expert Dr. Don Thomas. We hope you can join us.As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.
Help the LFA Improve Its Webchats -- Take This Survey!
Whether or not you have attended one of our chats, we would love to know your thoughts! With just a few moments of your time, you can help the LFA improve its Webchats. We'd like to have your feedback: what's working, what could be better, and more.
Take the survey now!
LFA Message Boards
As of this morning, there are 986 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
LFA Partners with CaringBridge
The LFA wants to help you stay in touch with family members and friends. Now, in partnership with CaringBridge, you can stay connected with your personal and private journal, guestbook and photo album -- all in one place -- using CaringBridge’s personalized website design.
It’s easy to set up your own website -- simply visit http://www.caringbridge.org/lupus and follow the simple steps.
Until next time, Wick
April 28, 2008
Walk for Lupus Now Events for early May 2008, Other LFA-Related Updates
Morning everyone ... well the arrival of spring here in DC was short lived. It's cool outside and raining. I think this is supposed to last thru mid-week. But 70 degree temps may return Thursday. I'll be waiting patiently.
Saw an older thriller over the weekend: 1979's When A Stranger Calls. Beginning was great. End was great. The middle was dull.
Couple of lupus-related updates to share, so let's get down to business.
Walk for Lupus Now
LFA's Walk season is well underway. As you know, money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Here are some of the upcoming Walks, taking place in early May 2008.
As of this morning, there are 864 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
LFA Partners with CaringBridge
The LFA wants to help you stay in touch with family members and friends. Now, in partnership with CaringBridge, you can stay connected with your personal and private journal, guestbook and photo album -- all in one place -- using CaringBridge’s personalized website design.
It’s easy to set up your own website -- simply visit http://www.caringbridge.org/lupus and follow the simple steps.
Awards Gala
The LFA's Fifth Annual Awards Gala will be held Wednesday, May 7, 2008 at the Mandarin Oriental Hotel in downtown Washington DC. If you are interested in purchasing tickets or securing corporate sponsorship, please contact Paola Williams at williams@lupus.org.
LFA Research enewsletter
The LFA's research enewsletter went out last week. If you'd like to take a look at it, we have archived a copy online. You can view it here.
If you'd like to sign up to receive the LFA's free enewsletters, you can sign up here.
That's the scoop from the LFA for now.
Until next time, Wick
Saw an older thriller over the weekend: 1979's When A Stranger Calls. Beginning was great. End was great. The middle was dull.
Couple of lupus-related updates to share, so let's get down to business.
Walk for Lupus Now
LFA's Walk season is well underway. As you know, money raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Here are some of the upcoming Walks, taking place in early May 2008.- Anchorage, AK -- Friday, May 2, 2008
- Charlotte, NC -- Saturday, May 3, 2008
- Houston, TX -- Sunday, May 4, 2008
- Vernon Hills, IL -- Saturday, May 10, 2008
- Columbus, OH -- Saturday, May 10, 2008
- Hickman County, TN -- Saturday, May 10, 2008
- Salt Lake City, UT -- Saturday, May 10, 2008
- West Hartford, CT -- Sunday, May 11, 2008
As of this morning, there are 864 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
LFA Partners with CaringBridge
The LFA wants to help you stay in touch with family members and friends. Now, in partnership with CaringBridge, you can stay connected with your personal and private journal, guestbook and photo album -- all in one place -- using CaringBridge’s personalized website design.It’s easy to set up your own website -- simply visit http://www.caringbridge.org/lupus and follow the simple steps.
Awards Gala
The LFA's Fifth Annual Awards Gala will be held Wednesday, May 7, 2008 at the Mandarin Oriental Hotel in downtown Washington DC. If you are interested in purchasing tickets or securing corporate sponsorship, please contact Paola Williams at williams@lupus.org.
LFA Research enewsletter
The LFA's research enewsletter went out last week. If you'd like to take a look at it, we have archived a copy online. You can view it here.
If you'd like to sign up to receive the LFA's free enewsletters, you can sign up here.
That's the scoop from the LFA for now.
Until next time, Wick
April 18, 2008
Walk for Lupus Now Events in April / May 2008
Morning everyone ... I think Spring has FINALLY arrived. Today and this weekend, it's supposed to go to high 70s and maybe hit 80 degrees. That makes me very happy. Walking around downtown DC during lunch yesterday was so very nice. No jacket required. I think we're all hoping the cold weather is gone for the year.
Lots to share with you today, so let me jump in.
Walk for Lupus Now
As I have mentioned before, it's now Walk season here at the LFA. Monies raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Here is a listing of upcoming Walks, taking place in April / May 2008.
LFA Message Boards
As of this morning, there are 793 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
Upcoming May 2008 Webchat -- Being Newly Diagnosed with Lupus
The first of 2 May 2008 Webchats will take place Wednesday, May 14 at 3 p.m. Eastern. Dr. Don Thomas will be the guest expert on the topic: "Being Newly Diagnosed with Lupus." We're expecting a good turnout. Hope you can join us!
That's all the lupus scoop from my end. Wishing you a fantastic weekend!
Until next time, Wick
Lots to share with you today, so let me jump in.
Walk for Lupus Now
As I have mentioned before, it's now Walk season here at the LFA. Monies raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Here is a listing of upcoming Walks, taking place in April / May 2008.- Washington, DC -- Saturday, April 19, 2008 (I will be there this weekend! If you're in the metro-DC area, I hope you can come join me!)
- Albuquerque, NM -- Saturday, April 19, 2008
- Atlanta, GA -- Saturday, April 26, 2008
- Las Vegas, NV -- Saturday, April 26, 2008
- Dallas, TX -- Saturday, April 26, 2008
- Anchorage, AK -- Friday, May 2, 2008
- Charlotte, NC -- Saturday, May 3, 2008
- Houston, TX -- Sunday, May 4, 2008
- Vernon Hills, IL -- Saturday, May 10, 2008
- Columbus, OH -- Saturday, May 10, 2008
- Hickman County, TN -- Saturday, May 10, 2008
- Salt Lake City, UT -- Saturday, May 10, 2008
- West Hartford, CT -- Sunday, May 11, 2008
- Hot Springs, AR -- Saturday, May 17, 2008
- St. Petersburg, FL -- Saturday, May 17, 2008
- Oklahoma City, OK -- Saturday, May 17, 2008
- New York City, NY -- Sunday, May 18, 2008
LFA Message Boards
As of this morning, there are 793 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
Upcoming May 2008 Webchat -- Being Newly Diagnosed with Lupus
The first of 2 May 2008 Webchats will take place Wednesday, May 14 at 3 p.m. Eastern. Dr. Don Thomas will be the guest expert on the topic: "Being Newly Diagnosed with Lupus." We're expecting a good turnout. Hope you can join us!
That's all the lupus scoop from my end. Wishing you a fantastic weekend!
Until next time, Wick
April 09, 2008
Lupus Blog Spotlight: Lupus and Humor
Hi everyone ...
I am heading out of town late this afternoon and won't be back until Monday, so I wanted to get another entry posted before I leave. Going to Phoenix, which is a first for me. Meeting up with some friends, and plan to visit the Grand Canyon and Sedona. Really looking forward to it.
Now let's jump into some lupus news.
LFA Message Boards
As of this morning, there are more than 720 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
Reminder -- "Ask the Doc: Open Forum" Webchat Today
The April 2008 Webchat will take place this afternoon at 3 p.m. Eastern. Dr. Bevra Hahn will be guest hosting the chat: "Ask the Doc: An Open Forum." We're expecting a good turnout for this as we received more than 110 questions in advance of the chat. Hope you can join us!
Lupus Blog Spotlight
Finally, I would like to turn your attention to another lupus blog. It is called Lupus and Humor. The blogger is Carla. Let me share a little bit about Carla with you.
Carla's a newlywed, and she and her husband have a 5-pound dog who is "a bundle of joy and love." She's a professional musician, who writes and performs her own funny songs. She also plays guitar. Carla has recorded 3 CDs, the 3rd of which is called "Sick Humor." This CD is all medical parodies, and includes such songs as "What If Your Butt Was Gone," "Prednisone," and "Sittin' in the Waiting Room." You can get a taste of her musical stylings at her other website, thesingingpatient.com.
If you have a few moments, swing by Lupus and Humor and say hi to Carla.
Until next time, Wick
I am heading out of town late this afternoon and won't be back until Monday, so I wanted to get another entry posted before I leave. Going to Phoenix, which is a first for me. Meeting up with some friends, and plan to visit the Grand Canyon and Sedona. Really looking forward to it.
Now let's jump into some lupus news.
LFA Message Boards
As of this morning, there are more than 720 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
Reminder -- "Ask the Doc: Open Forum" Webchat Today
The April 2008 Webchat will take place this afternoon at 3 p.m. Eastern. Dr. Bevra Hahn will be guest hosting the chat: "Ask the Doc: An Open Forum." We're expecting a good turnout for this as we received more than 110 questions in advance of the chat. Hope you can join us!
Lupus Blog Spotlight
Finally, I would like to turn your attention to another lupus blog. It is called Lupus and Humor. The blogger is Carla. Let me share a little bit about Carla with you.
Carla's a newlywed, and she and her husband have a 5-pound dog who is "a bundle of joy and love." She's a professional musician, who writes and performs her own funny songs. She also plays guitar. Carla has recorded 3 CDs, the 3rd of which is called "Sick Humor." This CD is all medical parodies, and includes such songs as "What If Your Butt Was Gone," "Prednisone," and "Sittin' in the Waiting Room." You can get a taste of her musical stylings at her other website, thesingingpatient.com.
If you have a few moments, swing by Lupus and Humor and say hi to Carla.
Until next time, Wick
March 24, 2008
Lupus Blog Spotlight: Lupus Christian Support
Hey everyone ...
Getting a later start on my blog writing than I had anticipated. Weekend in Jersey was a good one. It was nice to have a change of scenery and see some family. Saw Enchanted, which is very cute. Got to eat at Friendly's, which is my favorite place to get ice cream. And I saw a bunch of wild turkeys roaming the streets of Jersey. Who knew?
Let's jump into some lupus news.
LFA Message Boards
As of this morning, there are more than 550 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
Mark Your Calendars
Upcoming Webchat
The April 2008 Webchat will take place on Wednesday, April 9 at 3 p.m. Eastern. Dr. Bevra Hahn will be guest hosting the chat: "Ask the Doc: An Open Forum." What that means is Dr. Hahn will be taking any and all questions about lupus, as long as they're not patient-specific. If you'd like to submit a question in advance, you can do so here.
You can read the March 2008 transcript about kidneys and lupus here.
Awards Gala
The LFA's Fifth Annual Awards Gala will be held Wednesday, May 7, 2008 at the Mandarin Oriental Hotel in downtown Washington DC. If you are interested in purchasing tickets or securing corporate sponsorship, please contact Paola Williams at williams@lupus.org.
Lupus Blog Spotlight
Finally, I would like to turn your attention to another lupus blog. It is called Lupus Christian Support.
The blogger is Given55. She is a Christian counselor and an ordained minister. She also has lupus. She created the blog to provide support for others who have also been diagnosed with lupus.
I know some of you already have ... but if you get a moment, swing by Lupus Christian Support and say hi to Given55.
Until next time, Wick
Getting a later start on my blog writing than I had anticipated. Weekend in Jersey was a good one. It was nice to have a change of scenery and see some family. Saw Enchanted, which is very cute. Got to eat at Friendly's, which is my favorite place to get ice cream. And I saw a bunch of wild turkeys roaming the streets of Jersey. Who knew?
Let's jump into some lupus news.
LFA Message Boards
As of this morning, there are more than 550 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
Mark Your Calendars
Upcoming Webchat
The April 2008 Webchat will take place on Wednesday, April 9 at 3 p.m. Eastern. Dr. Bevra Hahn will be guest hosting the chat: "Ask the Doc: An Open Forum." What that means is Dr. Hahn will be taking any and all questions about lupus, as long as they're not patient-specific. If you'd like to submit a question in advance, you can do so here.
You can read the March 2008 transcript about kidneys and lupus here.
Awards Gala
The LFA's Fifth Annual Awards Gala will be held Wednesday, May 7, 2008 at the Mandarin Oriental Hotel in downtown Washington DC. If you are interested in purchasing tickets or securing corporate sponsorship, please contact Paola Williams at williams@lupus.org.
Lupus Blog Spotlight
Finally, I would like to turn your attention to another lupus blog. It is called Lupus Christian Support.
The blogger is Given55. She is a Christian counselor and an ordained minister. She also has lupus. She created the blog to provide support for others who have also been diagnosed with lupus.
I know some of you already have ... but if you get a moment, swing by Lupus Christian Support and say hi to Given55.
Until next time, Wick
March 19, 2008
Walk for Lupus Now Events in April 2008
Morning everyone ... I think Spring is about to arrive. I believe it's going to the mid 60s today. As much as I love my seasons, I have to say ... I am ready for some warmer weather.
Lots to share with you today, so let me jump in.
Walk for Lupus Now
As I have mentioned previously, it's now Walk season here at the LFA. Monies raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services.
Here is a listing of upcoming Walks, taking place in April 2008.
LFA Research enewsletter
The LFA's research enewsletter went out Monday. If you'd like to take a look at it, we have archived a copy online. You can view it here.
If you'd like to sign up to receive the LFA's free enewsletters, you can sign up here.
LFA Message Boards
As of this morning, there are 510 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
Wishing you a great Wednesday.
Until next time, Wick
Lots to share with you today, so let me jump in.
Walk for Lupus Now
As I have mentioned previously, it's now Walk season here at the LFA. Monies raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services.Here is a listing of upcoming Walks, taking place in April 2008.
- Bergen County, NJ -- Sunday, April 6, 2008
- Wichita, KS -- Saturday, April 12, 2008
- Washington, DC -- Saturday, April 19, 2008
- Albuquerque, NM -- Saturday, April 19, 2008
- Atlanta, GA -- Saturday, April 26, 2008
- Las Vegas, NV -- Saturday, April 26, 2008
- Dallas, TX -- Saturday, April 26, 2008
LFA Research enewsletter
The LFA's research enewsletter went out Monday. If you'd like to take a look at it, we have archived a copy online. You can view it here.
If you'd like to sign up to receive the LFA's free enewsletters, you can sign up here.
LFA Message Boards
As of this morning, there are 510 registered users for the LFA Message Boards. Get in on the action! Join the message boards here.
Wishing you a great Wednesday.
Until next time, Wick
March 12, 2008
Lupus Blog Spotlight: My Wife Has Lupus
Good morning everyone.
I realize it's now mid-week ... have you adjusted to the time change? I think I'm finally getting used to it. Wanted to catch you up to date on things. It's been a pretty busy week already at the LFA.
Yesterday was our Advocacy Day on Capitol Hill. Our advocates met with their senators and representatives to talk about how critical it is that Congress increases funding for lupus research at both NIH and CDC. Additionally, we want Congress to enact the Lupus REACH Amendments to address the unmet medical needs in research, awareness, diagnostic and treatment challenges associated with lupus. Overall, I'd say everything went very well. Once the dust settles, I'm sure I'll have an update within the next week.
About a month old, the recently launched message boards are doing well so far. As of this morning, we have more than 450 registered users for them. You can join the message boards here.
As a reminder, we have a Webchat this afternoon at 3 p.m. Eastern on Kidneys & Lupus. Dr. James Tumlin will be the guest host. We hope you can join us.
And finally, I'd like to do another lupus blog spotlight.
This one is called My Wife Has Lupus. Jeff writes for the blog, and as you may have gathered, his wife has lupus.
As Jeff has learned first-hand, lupus not only affects an individual on both a personal and economic level, but it also affects their families, and their loved ones on a daily basis. Because of this, Jeff decided to create a site that was dedicated to creating a community of support for lupus patients and their friends and families.
Jeff is also a frequent contributor to the "Caregivers of People Living with Lupus" section of the LFA message boards. In fact, he recommended that we add that category to the boards.
So if you get the chance, please stop by the My Wife Has Lupus blog and say hi to Jeff.
Until next time, Wick
I realize it's now mid-week ... have you adjusted to the time change? I think I'm finally getting used to it. Wanted to catch you up to date on things. It's been a pretty busy week already at the LFA.
Yesterday was our Advocacy Day on Capitol Hill. Our advocates met with their senators and representatives to talk about how critical it is that Congress increases funding for lupus research at both NIH and CDC. Additionally, we want Congress to enact the Lupus REACH Amendments to address the unmet medical needs in research, awareness, diagnostic and treatment challenges associated with lupus. Overall, I'd say everything went very well. Once the dust settles, I'm sure I'll have an update within the next week.
About a month old, the recently launched message boards are doing well so far. As of this morning, we have more than 450 registered users for them. You can join the message boards here.
As a reminder, we have a Webchat this afternoon at 3 p.m. Eastern on Kidneys & Lupus. Dr. James Tumlin will be the guest host. We hope you can join us.
And finally, I'd like to do another lupus blog spotlight.
This one is called My Wife Has Lupus. Jeff writes for the blog, and as you may have gathered, his wife has lupus.
As Jeff has learned first-hand, lupus not only affects an individual on both a personal and economic level, but it also affects their families, and their loved ones on a daily basis. Because of this, Jeff decided to create a site that was dedicated to creating a community of support for lupus patients and their friends and families.
Jeff is also a frequent contributor to the "Caregivers of People Living with Lupus" section of the LFA message boards. In fact, he recommended that we add that category to the boards.
So if you get the chance, please stop by the My Wife Has Lupus blog and say hi to Jeff.
Until next time, Wick
February 27, 2008
Mark Your Calendars for Upcoming Lupus Foundation of America Events!
Happy Wednesday to you.
Is it me, or is the week going by pretty quickly? I cannot believe it's already Wednesday.
There are so many things to share with you this morning. Lots of great Webchat topics / speakers have been locked into place. Our annual Advocacy Day is less than 2 weeks away. The LFA Walk season kicks off in April. Our annual awards gala is in May. World Lupus Day and Lupus Awareness Month are also in May.
So grab a pen and a calendar, and let's get started.
2008 Lupus Advocacy Day on Capitol Hill -- March 10-11, 2008
We're now less than 2 weeks out from this event. And there are some spaces still available. Learn more about the LFA's annual advocacy day here.
Save the Date -- Walk for Lupus Now Season starts April 2008
Walk for Lupus Now season kicks off in April 2008, with walks taking place across the country. Funds raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Find a walk that's close to you.
If there is no Walk near you, you can still help the LFA by setting up your own fund-raising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.
Save the Date -- Wednesday, May 7, 2008
The LFA's 5th Annual Awards Gala will be held at the Mandarin Oriental Hotel in Washington DC on Wednesday, May 7. To learn more, visit http://www.lupus.org/gala. The page was just updated with lots of great info. The three honorees have been named. Soledad O'Brien, CNN anchor and special correspondent, has been named Master of Ceremonies. And ... Patti LaBelle will be the evening's entertainment.
Save the Date -- Saturday, May 10, 2008
World Lupus Day will again be held on May 10, 2008. To learn more, visit http://www.worldlupusday.org/. Countries have just started to share with us the activities they'll be doing to raise public awareness about lupus this year. Check back for more info in the coming weeks and months.
Save the Date -- Upcoming Webchats at the LFA
Lots of great webchats are coming. All chats take place at 3 p.m. Eastern.
Almost 3 weeks old, the LFA message boards are doing well. Take a moment, stop by and join the discussion. We hope to see you there.
Whew! As you can see, lots going on. We hope you can join us for as many of these events as you can.
Until next time, Wick
Is it me, or is the week going by pretty quickly? I cannot believe it's already Wednesday.
There are so many things to share with you this morning. Lots of great Webchat topics / speakers have been locked into place. Our annual Advocacy Day is less than 2 weeks away. The LFA Walk season kicks off in April. Our annual awards gala is in May. World Lupus Day and Lupus Awareness Month are also in May.
So grab a pen and a calendar, and let's get started.
2008 Lupus Advocacy Day on Capitol Hill -- March 10-11, 2008
We're now less than 2 weeks out from this event. And there are some spaces still available. Learn more about the LFA's annual advocacy day here.
Save the Date -- Walk for Lupus Now Season starts April 2008
Walk for Lupus Now season kicks off in April 2008, with walks taking place across the country. Funds raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services. Find a walk that's close to you.
If there is no Walk near you, you can still help the LFA by setting up your own fund-raising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.
Save the Date -- Wednesday, May 7, 2008
The LFA's 5th Annual Awards Gala will be held at the Mandarin Oriental Hotel in Washington DC on Wednesday, May 7. To learn more, visit http://www.lupus.org/gala. The page was just updated with lots of great info. The three honorees have been named. Soledad O'Brien, CNN anchor and special correspondent, has been named Master of Ceremonies. And ... Patti LaBelle will be the evening's entertainment.
Save the Date -- Saturday, May 10, 2008
World Lupus Day will again be held on May 10, 2008. To learn more, visit http://www.worldlupusday.org/. Countries have just started to share with us the activities they'll be doing to raise public awareness about lupus this year. Check back for more info in the coming weeks and months.
Save the Date -- Upcoming Webchats at the LFA
Lots of great webchats are coming. All chats take place at 3 p.m. Eastern.
- Wednesday, March 12 -- Kidneys & Lupus with Dr. James Tumlin
- Wednesday, April 9 -- An Open Forum with Dr. Bevra Hahn
- Wednesday, May 14 -- Medication Management & Lupus with Dr. Joan Merrill
- Wednesday, May 28 -- Being Newly Diagnosed with Lupus with Dr. Don Thomas
Almost 3 weeks old, the LFA message boards are doing well. Take a moment, stop by and join the discussion. We hope to see you there.
Whew! As you can see, lots going on. We hope you can join us for as many of these events as you can.
Until next time, Wick
February 08, 2008
Lupus Foundation of America Launches Message Boards on Its Website
Happy Friday afternoon to you. I have great news to share!
The Lupus Foundation of America (LFA) has added message boards to the Community section of its Website -- lupus.org -- as a service to people with lupus and their families. The boards provide an opportunity for individuals to reach out and seek answers to questions about living and coping with lupus, as well as support one another in an understanding and caring environment. You can access the message boards here.
People with lupus often suffer from severe and disabling joint pain, overwhelming fatigue, and organ damage, which can be disabling and isolating. The LFA message boards will be a valuable resource for individuals who are not able to attend a support group meeting or education program, particularly those who live in rural areas or where no local resource is available. In addition, message board users can anonymously seek help without fear of revealing sensitive medical information to friends or employers.
Initial discussion topics include Recently Diagnosed with Lupus, Lupus Treatments, Men with Lupus, Teens with Lupus, and Coping with Lupus. There also is a category for discussing topics featured on LFA Webchats. Additional topics will be added based on feedback from message board participants.
Individuals visiting the LFA message boards can view what others have posted, post their own questions, or share comments about topics of interest. The message boards will serve to create an online community where people living with lupus, their relatives and friends, care givers, and information seekers can meet, bond together, share ideas, and build hope.
So ... come join us in the message boards today!
Have a wonderful weekend. Until next time, Wick
The Lupus Foundation of America (LFA) has added message boards to the Community section of its Website -- lupus.org -- as a service to people with lupus and their families. The boards provide an opportunity for individuals to reach out and seek answers to questions about living and coping with lupus, as well as support one another in an understanding and caring environment. You can access the message boards here.
People with lupus often suffer from severe and disabling joint pain, overwhelming fatigue, and organ damage, which can be disabling and isolating. The LFA message boards will be a valuable resource for individuals who are not able to attend a support group meeting or education program, particularly those who live in rural areas or where no local resource is available. In addition, message board users can anonymously seek help without fear of revealing sensitive medical information to friends or employers.
Initial discussion topics include Recently Diagnosed with Lupus, Lupus Treatments, Men with Lupus, Teens with Lupus, and Coping with Lupus. There also is a category for discussing topics featured on LFA Webchats. Additional topics will be added based on feedback from message board participants.
Individuals visiting the LFA message boards can view what others have posted, post their own questions, or share comments about topics of interest. The message boards will serve to create an online community where people living with lupus, their relatives and friends, care givers, and information seekers can meet, bond together, share ideas, and build hope.
So ... come join us in the message boards today!
Have a wonderful weekend. Until next time, Wick
January 16, 2008
Coming Attractions to the Lupus Foundation of America's Lupus.org Website
Good afternoon all ... from a very chilly downtown Washington DC. It's sunny outside at the moment, but only 39 degrees.
Apologies for the lateness of today's entry. This week has turned out to be rather busy, with lots of deadlines (both actual and self-imposed) coming down the pike. What has diverted my attention from this blog, you ask? Well ... let me give you highlights of 2 of the many things I'm working on.
First, the Lupus Foundation of America will be launching message boards within the next several weeks. Those will be a nice complement to our existing Website, lupus.org. Message board categories will include: Recently Diagnosed with Lupus, Men & Lupus, Lupus Treatments, Teens & Lupus, and Employment / Insurance Issues. So be on the lookout for those.
Secondly, I'm redoing the content / architecture of the Donate Now section of lupus.org. Over the next month or 2, you'll see new content, reformatted content and more intuitive navigation in this section.
We're excited about these improvements to the lupus.org site. We hope you will be too.
And now, back to my deadline.
Until next time, Wick
Apologies for the lateness of today's entry. This week has turned out to be rather busy, with lots of deadlines (both actual and self-imposed) coming down the pike. What has diverted my attention from this blog, you ask? Well ... let me give you highlights of 2 of the many things I'm working on.
First, the Lupus Foundation of America will be launching message boards within the next several weeks. Those will be a nice complement to our existing Website, lupus.org. Message board categories will include: Recently Diagnosed with Lupus, Men & Lupus, Lupus Treatments, Teens & Lupus, and Employment / Insurance Issues. So be on the lookout for those.
Secondly, I'm redoing the content / architecture of the Donate Now section of lupus.org. Over the next month or 2, you'll see new content, reformatted content and more intuitive navigation in this section.
We're excited about these improvements to the lupus.org site. We hope you will be too.
And now, back to my deadline.
Until next time, Wick
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