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« on: October 02, 2010, 03:56:29 pm »


©Howl Knights Newsletter/ 2010 October International Lupus Awareness Month Edition    
  "We Understand What You Are Going Through" ™

Site Founder/Owner: Kathy A. Patterson
   Founded 2005

 
The LupusMCTD forum is dedicated to awareness, support, friendship and information. This forum bridges the gap of an isolated patient to a community of compassionate people. It is a safe haven for many of us and for those yet to come.
 



 

"What have you done today to advocate for another Lupus MCTD patient?"
 ~ Kathy A. Patterson
 
 

Administrator's Corner:

-United States 2010 Flight of the Hope Bracelet™ is making its rounds! Twenty American Lupus patients are participating in this fundraiser!  Participants are adding a charm of their choice to the Hope Bracelet, and are then asked write a few words of how Internet friendships and support have helped them and add quality to their lives on the LupusMCTD Group Face Book page: http://www.facebook.com/topic.php?uid=230133614145&topic=15951 .

Once it has returned to the Lupus MCTD headquarters, the Hope Bracelet will be auctioned off and the proceeds will be donated directly to ALR/Alliance for Lupus Research where 100 % of donations go directly into research.
 
-The reaction that we have received about the 2010 Hope Bracelet project has been so positive, that Kathy has decided to do an International 2011 Flight of the Hope Bracelet. Stay tuned for announcements!
 
-Kathy’s kind Reminder:  while the Internet enables us to connect and to form relationships with so many wonderful patients; sadly, some people are using Lupus Internet communities and forums as a means to prey on people. Please use caution, and report such individuals to forum administrators.
 

-A special word of thanks to our friend, Kristel Goodspeed-Correa, SLE and RA patient-advocate, for allowing us to use her original awareness graphic for this newsletter edition!

 

- LupusMCTD Blog talk radio program! http://www.blogtalkradio.com/lupusmctd
 We will be hosting several radio shows during October International Lupus Awareness month. Show schedules will be listed soon!
On both Lupus MCTD Group page on Face Book: http://www.facebook.com/group.php?gid=230133614145&ref=ts
and on the mother site:
 www.LupusMCTD.com.
Radio shows are proving to be an interactive way for patients to provide and offer support to one another, as well as educating the public. Here is a link to an archived open-mic show by and for lupus patients:
http://www.blogtalkradio.com/lupusmctd/blog/2010/08/15/lifting-lupies
Radio host Kathy is always looking for great radio topics! Do you have an idea for a
radio show topic? Email Kathy at: kathyawalters@gmail.com
and, be sure to put Blog Talk Radio in the subject line!
 



The Lupus MCTD Courage Award™

Do you know of an exemplary Lupus or MCTD patient who is still living a full and productive life in spite of their illness? Do you know of a fighter patient who is a source of inspiration to others? Certainly, you must know at least one phenomenal patient who deserves an acknowledgment for their efforts!  Forward nominee's names, web site/blog links and brief bio to Kim: LupusMCTDasst@aol.com
Don’t know what the Courage Award is? Check it out! Courage Award Link: http://www.lupusmctd.com/index.php?topic=3906.0      

 

 
Men get SLE disease too!
Weeks prior to a male friend of mine being officially diagnosis, was in the hospital having a bunch of blood work done, and the phlebotomist asked, “OK, which one of those doctors did you piss off?” My friend said, “What are you talking about?” The tech said, “They are testing you for all these female autoimmune diseases, so I figured you must have pissed one of them off…”
 
 
Males with SLE:
·       The ratio of male lupus patients to females is 1 to 9
·       Males usually satisfy the ARC diagnostic criteria sooner than females
·       Males usually have more aggressive forms of the disease
·       Males make up less than 10% of the SLE population
 
 
Speaking of male lupus patients, we would like to introduce you our friend Geoff Thomas, owner/founder and editor of
The Lupus Magazine!
 
The Lupus Magazine
 
Because the editor of this newsletter is under the weather, she has taken to just copy and paste Geoff’s bio from his TLM bio page:
 
Geoff was born and raised in Sydney, Australia a 'few' years ago now. His passion for travel has taken him to numerous countries including Russia, Japan, Canada and extensive visits to the United States. Other regions visited have included The South Pacific, Great Britain and many European countries.



Geoff has attempted to set up Rugby League teams in Jamaica, gained media accreditation as a freelance photographer at Grand Slam & international tennis tournaments and has a feature film script in the bottom drawer. It's also rumored he is/was once a Butcher.

Having spent a period of time in Daytona in the late nineties, his favorite NASCAR driver was Geoff Bodine, making it easier to explain the American variation of his first name.

He recently returned to school to study Radio Broadcasting as a 'mature aged student' though he's not as old as he looks!

In 2003 he cycled over 5000 kilometers to cross Australia from coast to coast and rates it as one of his most memorable experiences... Despite yet another bloody flat tire on the finish line at Perth!

That 'taste' of long distance cycling led to the belief that you don't give up.

Cycling across the United States had been an ambition for quite a few years. However Geoff ended up riding 9018 miles (14,428 kilometers) around the United States instead.  Thankfully, his crashes made the news for lupus and eased the pain.
 
"Lance Armstrong didn't have to tow a bloody trailer!" - Geoff Thomas, crossing the American Rocky Mountain ranges on a bicycle.
 


Diagnosed with a mild form of (discoid/cutaneous) Lupus in 2003, Geoff aimed to raise further awareness for the disease and all forms of it in America, and importantly in the Asian region close to home. The fact is, lupus is a global concern. So, he set up a world-wide blog for awareness and this website.

Within moments of finishing his monumental trip, Geoff wrote various magazine and web articles and hopes to finally finish his book regarding his lupus journey. He is proud to have represented The Lupus Foundation of America and The Alliance for Lupus Research.

He also realizes lupus & computers can be just as frustrating as 44 flat tires - or being a Richmond Tigers supporter - but we'll get there one day!
 
Contact Geoff:
lupusnews@live.com.au  
bikeusa07@hotmail.com
 
 
Helping other's with chronic illnesses is a sure way to make living with a miserable invisible condition all the worthwhile!

 


Image by Kristel Goodspeed-Correa
 
Are you a patient feeling a little bummed out, or down in the dumps? Do you feel like you cannot make a dent in your little corner of the world? "Pay it forward!" Support and comfort those in need! Our personal experiences as patients living each day with Lupus and MCTD, can really influence other people and their lives. Our experiences and challenges can be transformed into a
bounty that can empower others.
Advocacy takes all shapes and
sizes!
 
 



LupusMCTD Foundation of America Mission Statement

 The mission of the LupusMCTD Foundation is to empower people with Lupus and Mixed Connective Tissue Disorders and provide hope for future patients.

Core activities that implement our proactive mission:

1. We enrich the lives of people with Lupus/MCTD and their families to serve as a leading resource for education and support on the Internet.

2. We, as patient advocates encourage compassion through educating the public on the impact that Lupus has on the individual and family.

3. We network with Lupus researchers to educate and broaden awareness to the public.

4. We are a mainspring for collaboration with other community and national organizations
 
A Friendly Reminder:
Howl Knights newsletter is the intellectual property of the Lupus MCTD Foundation and www.LupusMCTD.com . Using any part of text in other publications without written permission from this site is a copy writes infringement. It is unlawful and unprofessional to plagiarize. We welcome individuals and networks to quote our work with written permission. Please obtain permission from us by writing at: LupusMCTDasst@aol.com
 

Howl Knights Newsletter Editor and Kathy’s Right Hand CNS Challenged Girl:  Kim Nault

Keep the Light Going!


 
« Last Edit: October 02, 2010, 04:07:16 pm by Adminஐﻬ » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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LupusMCTD Founder & Patient
Former Domestic Violence SURVIVOR
Kathy A. Patterson

Author of the Upcoming Memoir Book:
"Fighting From The Inside Out"..
A lupus patient fights the beast within her immune system and the beast at home....

e-Booklet filled with photos and videos of what abuse was, signs to look for,
where to turn to for help, and much more to help others like me...


For more information
Call the National Domestic Violence Hotline at 1−800−799−SAFE(7233)



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