We have been discussing the importance of reaching those medical professionals who work most closely with lupus patients for quite some time  and are thrilled to be the first within the Lupus Foundation to gain such an opportunity!

There will be more information coming soon regarding speaker, topic and other details.  If you are a medical professional who may be interested in pursuing CNE credits in general or lupus education specifically, the website to learn more about the upcoming details will also be found at the University of Washington School of Nursing website.

Great job and thank you, Kathy, for being so proactive in securing our voice and our medical support! 

The LFA Pacific NW Chapter will be hosting their annual Mad Hatter Walk N Roll for Lupus event on that day at Magnuson Park at Sandpoint Way.  Step out to join your community – both the lupus community as well as your Seattle one – and present lupus with energy and fun, something we know there is usually so little of in our daily lives.  Get your families involved, even if you didn’t raise funds (which doesn’t have to be much and does help our PNW).  The more we are present, the better our ‘present’ feels knowing we aren’t alone in this. 

A special guest will be on hand to offer up her recent book, Despite Lupus (Four-legged Press, 2009) – Sara Gorman will have some of her books on hand to sign and sell.  She is an AWESOME gal – just meeting her is a gift in itself.  We will be having her join in on our November group book discussions to be mentioned later.  For now – go say hello to her and all the others who are there to spread the word:

Life is ours and we want you to see that we are living as well as we can, despite lupus~

Hi Members and Friends,

I am Kathy Casey, the Executive Director of Lupus Foundation of America, Pacific Northwest Chapter.  I will be celebrating 8 years here this month and have to say that I feel honored to be working for and representing all of you here in the Pacific Northwest. 

I have to admit that I didn’t even know much about lupus when I first entered this position.  Over the years here at the Chapter, I have learned a great deal from all of you – whether it be through letters, emails, phone conversations or meeting you at our events.  

I think one of the most important things I have learned is how many of your struggle with the illness, but more so from your experiences with your physicians – especially primary care.  As you know, healthcare reform is receiving a tremendous amount of press coverage and prevalent within local community dialogue.  We would like to hear more from you regarding your experiences, too – both positive and negative – in how you work with your doctors toward managing your illness.  It is clearly important for patients to receive the guidance and support early on in their diagnosis, to improve their chances in stabilizing the disease process.  Emotionally, it is also important to know that they can trust their doctors to be looking out for their well being and not contribute to the ‘loss’ patients are already going through. 

With every chance I get, I try to walk away from those conversations better informed and prepared to work for you all.  Thank you for offering me this opportunity to continue to learn from and serve all of you living with lupus. 

On another note, these are exciting times for the chapter.  Last fall, a new Board of Directors was put in place.  This would not have been possible without the diligent and committed work of the nominating committee.  We have recently added three more to the board and are looking forward to working with these new members.  At present we only have one board member from Oregon.  We would like to see Oregon have better representation that is why we are coming to you for help.  You all have family, friends and co-workers that see the difficulty lupus has caused in your daily life.  Search through you e-mail address book, your Christmas card list, and any club or church you belong to.  Here is a way you can become involved and help your chapter.  Just e-mail us the name, address and telephone number of a candidate for the nominating committee.  We want to hear from you.

This young board has a lot on their plate to look at and evaluate.  How can we serve our constituents better, reach more people affected by lupus, evaluate education programs, more fundraising events and raise awareness of lupus.  A tall order, but with energy, enthusiasm, and commitment of this board the chapter will realize its goals.

 We are also becoming more active in utilizing social networks such as Twitter, which you can find our updates and announcements by following us : @pnwlupus .  On Facebook, please join our group and stay current with us along with other members here in the area.

Calling all Team Captains: 

It’s that time of the year again!  Start putting your teams together by contacting your family and friends to participation in the “Mad Hatter Walk & Roll” walk this year.  Last years event would not have been the success it was without you and your team’s dedicated efforts and support.

Our goal this year is to be bigger and better then we were last year and your participation as a Team Captain can make a difference again — this year.  It’s our Team Captains that bring the people to the walk and the bulk of the donations.  And you did an awesome job.  Not only did you raise money but, you raised awareness about lupus, you got people involved that had never been involved before and you created a positive atmosphere.  I hope you all had some fun in the process and that you will want to do it again this year.

You can register to be a Team Captain on line at www.lupuspnw.org/teamcaptains or create a fundraising page at www.firstgiving.com/lupuspnw/.  A Team Captain Kit will be mailed to you with everything you will need to help you build your team.  If you have questions please call the chapter office at 206/546-6785 locally or outside of Seattle 1-877-774-2992.

Again, thank you for such an outstanding and successful year.  Come have fun with us and together we will make a difference this year!   I look forward to seeing you at the Walk for Lupus Now, Mad Hatter Walk & Roll.  (Directions to the parks are available by visiting our website)

Portland

Saturday, September 19           Willamette Park

Spokane

Saturday, September 26           West Central Community Center 

Olympia

Saturday, October 3                 Sylvester Park

Seattle

Saturday, October 17               Magnuson Park

Sending everyone our very best~

Kathy

I am Tonita Webb, Board President for the Lupus Foundation of America’s Pacific Northwest Chapter.  First, let me tell you a little about myself.

I am originally from Portsmouth, Virginia, but I now reside in Des Moines, WA.  I currently work for a Seattle area credit union as the Vice President-Chief Human Resources Officer.  I have been married to Brian for 18 years and we have four beautiful children.  While I do not have lupus, I am very familiar with this devastating disease.  My mother was diagnosed with lupus when I was five years old and she lost her battle with the disease in 2001.

After losing my mother, I felt compelled to help in some way. 

My mission here in the Pacific Northwest is no different from that of the national chapter’s mission to find the causes of and a cure for lupus as well as providing support, services and hope to all people affected by lupus.  On March 3, over 1300 people let their voices be heard during LFA’s Advocacy Day through Twitter, Blogs, Facebook and physical presence.  We asked our congressional leaders for increased funding for lupus medical research at: the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC).  We also called for a Surgeon General’s Report on gaps in lupus research and education.  The report would identify gaps in lupus research and education, and it will make recommendations related to:

Federal funding for lupus research

Professional and public lupus awareness and educational programs

Approaches to improve the quality of life for individuals with lupus

Access to quality health care for individuals with lupus

We received overwhelming support from our congressional leaders for the LFA’s mission and now we must keep the momentum going.  I will be participating in all of the Pacific Northwest “Walk for Lupus Now”  ™ walks.  Will you please join me?  If you want to help raise awareness, participate in one of our many fundraisers or join the Board.

The walks scheduled here in the Pacific NW for 2009 are:

Portland:  Saturday, September 19, 2009   Willamette Park

Spokane:  Saturday, September 26, 2009    West Central Community Center

Olympia:  Saturday, October 3, 2009    Sylvester Park

Seattle:  Saturday, October 17, 2009     Magnuson Park at Sandpoint Way

Please contact me personally at tonitaw@lupuspnw.org or contact the chapter office at 1-877-774-2992.  I am hoping I see you at a walk near you.

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Tonita brings a great deal of energy, talent and commitment to our Pacific Northwest offering us rejuvinated enthusiasm in building lupus awareness.  She represents a group of people who have stepped up to the plate to create stronger connections with local and national resources in research and educational programs.  Join her and the rest of the PNW Chapter in making important strides here in 2009.  You can also follow her on Twitter as @LFAPNW