Lupus Foundation of Northern California

September 8, 2014

LFNC News

DROP YOUR PIN ON THE WOLD LUPUS GOOGLE MAP

Find out how to put yourself on the map!

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MARIN SUPPORT GROUP

September Meeting

We will meet on SATURDAY, SEPTEMBER 20, 2014 FROM 10:00-12:00, AT 30 N. SAN PEDRO RD., SAN RAFAEL, CA, 94901. Speaker: Mary Ray, co-founder of My Health Teams. My Health Teams has created a social network for people living with Lupus. Mary will speak about the free network.

Contact: Marilyn Wedner, mwedner@att.net, 415-383-1924.

REVIEW US!

In the last three years, LFNC has been honored with the GreatNonprofits Top-Rated Award, based on feedback from clients, volunteers and supporters who gave favorable reviews regarding their experience with the organization.

Please help us achieve this honor again this year by answering a few questions on the review site for LFNC. Clicking HERE will take you to the review site. It just takes a few minutes. We thank you in advance!

The Summer NewSLEtter is Here!

Ready to read it already? Click here for the online magazine format, or here to download a printable version (PDF).

The Summer 2014 issue, headlined "The Heart of Lupus", features articles ranging in subject from cardiovascular disease in lupus to exciting new lupus drug trials to a detailed discussion of the immune system and updates on LFNC's activities.

It was Colleen and Joe Brown this year. Will it be you next year?

Check out Colleen Brown, Joe, and daughter Kira picking up their brand new Mercedes!

Colleen and Joe have supported the Lupus Foundation for the past 15 years.

Do you want to join the Browns in the list of our winners? Because we know you do, we have opened up next year's drawing early, and you can already buy tickets!

Click here to see the announcement and buy your tickets now!

The tickets are only $75, but you can get three (3) for $200 and five (5) for $300. Buy early, and you will be eligible for two incredible early bird prizes - a shopping spree and a cruise - in addition to the 2015 Mercedes!

To buy your tickets, fill out the form, or call the office at 408-954-8600. And keep your lucky charm bracelet handy!

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Hope, Survival, and Never Giving Up: Actress' Story of Beating Lupus

In past newsletters, the LFNC has kept readers informed about

Emmy Award-winning actress Kristen Johnston's fight with lupus. But this past week brought us another story from her: one of hope in the face of struggle, survival in the face of devastating disease. Johnston wrote the following on her Facebook page (reprinted with permission):

Just so y'all know, I think my last few posts have been misleading. I'm actually doing GREAT. I feel good & energetic & healthy for the 1st time in a full year.

I know I'm so lucky...many go for years with chronic illness & pain. I've only seen a tiny portion of what millions feel for years & years. It's a waking nightmare, and one I know I'm deeply blessed to have survived.

The form of lupus I have (Lupus Myelitis, where the immune system begins attacking your spinal cord) is very rare, only 1 to 2% of lupus patients have it.

My doctor says I was weeks away from becoming a permanent quadrapeligic.[sic]

But thank god I was diagnosed in time, and after 6 months of treatment, I'm now in full remission.

I've been shooting The Execs since June, and we're all having an incredible time.

For those out there still suffering, my heart goes out to you. Keep fighting. The Dr. who saved my life was the 18th one I saw...you never know when that Dr who will really help you will appear. DON'T GIVE UP HOPE. I almost did, and I'm exceedingly glad I didn't.

Thanks for all your support & love,

KJo

"Don't give up hope." That is one sentence that encompasses what LFNC is about, what the lupus community is about, and what you're about. So many patients and their loved ones come to the brink of giving up before they find hope. Lupus remains a difficult disease to diagnose and treat that still gets too little attention from the research community and the community at large, but Johnston's story of surviving and beating back lupus myelitis is a powerful reminder that we will not lose the battle against lupus so long as we don't give up.

So if you're thinking about giving up, don't. Give us a call. 408-954-8600. We can help.

More Ice Bucket Challenges Taken Up to Help Lupus: Jamaica Edition

William Mahfood, (left) Chairman of Wisynco, makes the $250,000 donation Dr Desiree Tulloch-Reid, President of the LupusFoundation of Jamaica. Looking on from left are Minister of Health, Dr Fenton Ferguson; Beulah Stephens, CEO of Kingston Public Hospital and Dr Natalie Whylie, Senior Medical Officer at KPH.

For a long time, as a community we have known that lupus not only affects women at a disproportionate rate (9:1), but that it also has a higher rate of occurrence among people of color. So it seems fitting that yesterday in Jamaica, Wisynco handed the Lupus Foundation of Jamaica a $250,000 check in response to the ALS Ice Bucket Challenge.

"We thought it was appropriate to look at what are the diseases that are more relevant in the Jamaican context. Our research revealed that ALS is not as prevalent here. However, ALS falls within a group of autoimmune disease that includes Systemic Lupus Erythematosus and Jamaica has one of the highest rates in the world with it affecting 1 in 250 to 300 persons here," said [Wisynco chairman William] Mahfood.

Minister of Health Dr Fenton Ferguson speaking at the presentation Friday, September 5 commended Wisynco for using the ALS Ice Bucket Challenge to bring attention to compromised immune system type diseases that have a real impact on Jamaica and Jamaicans.

"What is taking place today is not just a gift of $250,000 to the Lupus Foundation, but really represents an opportunity to lift the profile of this disease and continue the public education," said Ferguson.

Read more here. Jamaica has highlighted lupus before, most recently as the Jamaica Observer featured Miss Jamaica Universe contestant Zandrea Bailey's battle with Lupus.

The LFNC congratulates the Lupus Foundation of Jamaica and thanks Wisynco for its commitment to fighting lupus.

Information contained in this e-Newsletter should not be considered a substitute for professional diagnosis, treatment or management of S.L.E. and symptoms by a physician.

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Editor: Spandan Chakrabarti

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