Get to the facts maam!

Thanks to Get in the Loop for this amazing infographic!!  I hope everyone is celebrating Lupus Awareness Month and that you enjoyed some of our activities this month.

LIFE IS FULL OF UNEXPECTED SURPRISES!

LIFE IS FULL OF UNEXPECTED SURPRISES!

May 1st was the kick off for Lupus Awareness Month.  As you all know, we celebrated in style at the Bing Lounge http://www.alphabroadcasting.com/pages/lounge surrounded with family and friends.  It was our pleasure to spend time with an amazing young woman with an inspirational story....

A couple of years ago, Nicole made what she called an “easy decision”. She donated one of her kidneys to her best friend whom suffers from Lupus.  It was such a breath of fresh air, to meet someone who has such an immense amount of compassion and big heart.  Nicole has started a blog, "One Kidneys Journey", discussing her journey and sharing her experiences. And we are so happy to report that her friend is doing well.  Please note there are graphic photos included.

Who knew that when this picture was taken they would be forever bonded in a way they could have never imagined!!

Years later…. Healthy and Happy!

GOT SPOONS?..... A NEW PERSPECTIVE

In celebration of Lupus Awareness month, many people are asking “What is Lupus?” Christine Miserandino, the author of "The Spoon Theory", gives a great analogy of describing this debilitating disease.  Her explanation gives us a visual of a Lupus sufferer and their everyday struggles. 

Brews & Babes

Bridge to Brews

We had such a great time at the Bridge to Brews run a couple weeks ago. Our friends at Terrapin Events allowed us to be the beneficiary of this run and a fun day was had by all. We sold beer to the exhausted runners and sold many of our merchandising items in a booth in the pavilion.

I spent most of the day in the merchandising booth with my wonderful friends Anita Noble and Amanda Faught! We had a nice time enjoying the brisk morning and talking with a lot of people about lupus and the things Molly's Fund could do to help their friends or family that are affected by this challenging disease. A lot of awareness building was done that morning and we raised a nice chunk of money for Molly's Fund Fighting Lupus as well which goes back to all you lupus patient's out there.

May is Lupus Awareness Month!

We are so excited that May is lupus awareness month.  We have an amazing calendar of events that are coming up.  We start with a kickoff event on May 1, 2012, at 11:00 a.m. in the Bing Lounge at the Pac West Center in downtown Portland.  There we will hold a press conference declaring May as lupus awareness month and we will be receiving a proclamation from the Governor that will be delivered by Oregon Senator Diane Rosenbaum.  There is also a special announcement that I will tell you more about in a minute!

May 10th is the candlelight vigil where we all join together to commemorate those who have lost their fight with lupus and those of us who continue fighting.  Join us at 8:00 p.m. and we will come together on the southwest side of the Morrison Bridge and watch it be lit with our colors at dusk.  It will be a special night for patients and their families.

On May 19th,at 1:30 p.m., there is an open house for patients to send in their questions to a world-renowned doctor who will answer our inquiries and share information about the latest treatments out there for a lupus patient.  The forum will take placce at the Avalon Hotel and is open to all members of the public.

The next day we have our first walk ever! It's called Butterflies in the Park and it takes place at 8:30 in the morning at Oaks Park Amusement Center.  There will be a kids walk first and then the participants will be in a 3K fun run.  There will be entertainment from "This not This", refreshments, and t-shirts for everyone who runs/walks.

I would like to challenge everyone to beat me with their personal fundraising pages.  I put mine up and within two days I had over $500.00!!  I would love it if you would beat me in this challenge, but I intend to put up a good fight! :-)

The Fairy and the Wolf 

I am so pleased to announce the launch of our new children's book, called "The Fairy and the Wolf".  It is a fairy tale type story of young Bobby who discovers that his mom has lupus.  We join him on his journey as the Wolf, named Lupus, comes along and follows his Mom telling her all the bad things we should do, such as not taking care of ourselves, missing doctors appointments, etc.  Luckily, Bobby's Mom also has Miss Fairy, who follows her around and tells her to get her rest, relax, don't overdo it, etc.

This is a great way for parents to come together with their children and not only explain what lupus is, but how it affects their parent and the family as a whole, and what they can do to help make things a little better.  I had the pleasure of co-authoring this book, with two of my dearest friends, Jaime Gault and Nicole Lawry.  Together, we created a great way for families to communicate about lupus and how it affects everyone.

Thanks again for reading my posts and I look forward to celebrating Lupus Awareness Month with all of you!!!

Science is amazing isn't it?

Genes? Really? Who'd Have Thought?

Science is an amazing thing sometimes.

The people who dedicate their lives to research and development of new things to help in the various illnesses we are afflicted with.

Once again, researchers have found new ideas in understanding lupus.

Oklahoma Medical Research Foundation scientists along with a massive international collaboration of other scientists have found three new genes that may be linked to how lupus develops. Two of the genes were found in most of the ethnic groups studied and the third primarily in African-Americans.

This study is notable because of its inclusion of a wide range of ethnic backgrounds. Considering lupus affects people of color two thirds more often the any other group, this is vitally important.

Senior author and OMRF scientist Kathy Moser, Ph.D. says, "Identifying and characterizing these genetic risk factors in lupus will undoubtedly lead to improved diagnostics and therapeutics for this complex disease.

New Therapy?

Study of the Epstein Barr Virus aka EBV in lupus-prone mice has shown that it protects them from lupus related problems.

Dr. Pelanda, lead author on the paper appearing online in The Processing of the National Academy of Sciences said, "We believe these findings could lead to therapeutic targets for lupus and other autoimmune diseases."

Mice cannot be infected with EBV, however, there is a virus with a similar pattern of symptoms and infection called gammaherpesvirus 68 that does. When the mice were infected 100% of them developed lupus. However, tissue damage in the kidney's was reduce from 80% to 20% and other measures of lupus like including activation of lymphocytes and dendritic cells were also reduced.

They have yet to determine why the virus drastically inhibits development and progression of lupus on many levels, but they are on it! Who'd have thought a virus could be so beautiful!

For more information or to view the articles from which this information came from, check out Medical News Today.

All in all, this is good new in the world of lupus. Every baby step made in a positive direction brings us closer to thorough understanding and a better treatment if not finally a cure.

See! Science is an amazing thing!

It's That Time!

IT’S THAT TIME!

Lupus Awareness Month is fast approaching. We have many exciting events going on during the month of May. It is important to recognize the daily battle for those who suffer with this debilitating disease and to honor and give respect to those who are not as fortunate. Did you know that lupus is more common than multiple sclerosis, muscular dystrophy, cystic fibrosis, and leukemia combined? We are using the month of May to help raise awareness about this silent disease. We kick off the month on May 1st at 11:00am with a gathering of dignitaries, patients, families and friends at the Bing Lounge, in the PacWest building in downtown Portland. The address is 1210 Southwest 6th Avenue. We are looking forward to sharing the beginning of an exhilarating month with those near and dear to our hearts.

ARE YOU FEELING BLUE?

You may not be, but the Morrison Bridge will! It will be lit Teal, to be exact, which is Molly’s Fund Fighting Lupus’ colors. We invite you to join us May 10th at 7:00pm for our annual vigil and bridge lighting ceremony. We welcome you to share with us as we honor those who have lost their fight against lupus. The candlelight vigil will be held in the waterfront park besides the Morrison Bridge on the southwest side of the bridge.

SPREAD YOUR WINGS!!

Butterflies in the Park-an awareness walk for lupus is our first ever organized walk. Join Molly’s Fund for a day of walking, talking and awareness building about this devastating disease. This fun walk around the beautiful Oaks Park area and Willamette River is our newest fundraising event, and we are expecting up to 300 people to participate! We invite everyone to create their own fundraising page and have friends and family support them for a great cause. To register for the event please go to: https://mffl.ejoinme.org/​registration and to create your own fundraising page, please go to https://mffl.ejoinme.org/butterflies. We look forward to seeing you there!

Top Three Reasons I went to Arizona

Reason #1: Dry Arizona heat

I cannot tell you how much better my body felt in that wonderful dry heat. I have been suffering through a fibromyalgia flare for the last three weeks and I haven’t felt better than I did during my recent trip to the Grand Canyon state. My parents and I headed east this past week for a half-vacation, half-business trip and I have to say that I enjoyed each and every minute. The dry heat was like a magic balm to my fascia and joints. I wish that I could bottle up that sensation and bring it back to rainy Oregon!




Reason #2: Relaxation

I can’t remember the last time I took the time to lay by the pool, but remind me to do it more often, because its restorative powers are amazing! :-) Honestly, considering how much stress affects those of us with this crazy disease, we really have to make it a priority to take breaks from life and let ourselves relax and unwind from life. Even if it’s just taking a few minutes to do a few yoga poses or take a long hot bath, it can make life a little easier if you take a few moments to unwind.




Reason #3: Business

I had the pleasure of being asked by one of the drug companies that makes Benlysta to come and talk to their sales team and share my story. I’ll be the first to admit that I get pretty nervous talking in front of groups of people, but for some reason when I got on stage while doing this presentation, the nerves just seemed to fade away and it felt rewarding to give these wonderful people an inside look at what living with Lupus is like. I took the opportunity to give the patient a voice and it was an important moment for me and for Molly’s Fund as we were able to discuss that as well. They brought my mom on stage and she discussed the challenges of supporting a patient with Lupus. We also talked about why we started Molly’s Fund Fighting Lupus and how we loved being able to help other people in the same situation as mine.

So there are my three reasons for why I went to Arizona and what’s been going on with me lately. I hope that you will check out our website and our Facebook page to keep up with all of the things that are going on right now with Molly’s Fund. Thanks for commenting my friends and I look forward to blogging with you more soon!!!

Run Molly Run

Bridge to Brews is an Event you Won't Want to Miss!

What better way to spring into the sunshine than to share your time for a great cause? Molly’s Fund Fighting Lupus is the beneficiary for the Bridge to Brews event. Here is the lowdown…..Come join thousands of people, enjoying great food, music and beer, while running throughout one of the greatest cities in the world. “First off the race starts and finishes at one of Portland’s original breweries...Widmer Brothers Brewing Company! The event also features two great distances that take you over one of the most picturesque bridges...the Fremont Bridge! And last but certainly not least, everyone gathers after the event for great music, food and beer from Portland’s premiere running event company.... Terrapin Events!”-Heather Fruhling, The more participants the better! Please register at Terrapin Events.

Time to Raise Money!

Have you ever had your own fundraising page to raise money for your favorite nonprofit? Well, now you can. We created a website that allows you to share your story about why Molly's Fund is important to you. You friends and family can donate money that goes towards helping Lupus patients and their loved ones. Awareness is half the battle. Please begin your personal pages at Bridge to Brews.

Molly’s Fund Fighting Lupus is pleased to partner with the Portland Metro Homebuilders Association to hold a first-time event-The Ultimate Chef Showcase, May 2 & 3 at ten different homes throughout the metro area. What exactly is it you ask? Let us tell you! “The Ultimate Open House New Home Tour is changing the way homes are sold in the Portland area….The Ultimate Open House New Home Tour was designed especially for homebuyers interested in new construction. The tour showcases the top builders in the Portland area and offers a wide variety to help you find and purchase your ultimate new home”.-HBA Which event are you most excited about?