Facebook Exhaustion?

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There are days when all of us wonder what we are doing online so much of our day. Are you feeling vulnerable when reading stories of others who might not be doing well or fearfully comparing your stories to that of others? This is one of the drawbacks of joining an online community. You take the good with the bad and the ugly. So how can you protect yourself on Facebook?

If you are in feeling sad or anxious, perhaps choosing not to log in or only logging in to read your private message may be a good strategy. Or you might consider a Facebook break, and give the groups time to cool down and then jump back in when you are feeling stronger and wish to reconnect with others who are affected by mesothelioma.

There are many who feel the need to share, share and share again, and others who wish to maintain their privacy and participate on a limited basis. Some friend everyone in sight and then get bombarded with messages and feeds, while others judiciously join in and make friends slowly and carefully. Friends can be fleeting on Facebook. You do have the option to “unfriend” someone whose posts are particularly disturbing to you and perhaps send them a simple note as to why you might be unfriending them.

The Foundation is sensitive to the needs of those in the community and wishes to make the Facebook support group experience one that provides accurate information, support and the ability to connect with others.  We will never exploit those in our community and respect your privacy and emotional well-being.  Please contact any staff members with suggestions, comments, or even criticism. That is how we learn how best to care for our community.

THE TOP 10 REASONS TO GO TO THE MESO FOUNDATION’S 2013 SYMPOSIUM ON MALIGNANT MESOTHELIOMA

bonnie_aMesothelioma – by now you all know how to pronounce it, and you know that being informed is important. You also know about the Mesothelioma Applied Research Foundation or you wouldn’t be reading this blog. But did you know just how amazing their symposia are?

Let me give you an example of just a few highlights that I’ve seen:

1. People hugging people just because they have this disease in common and needed a hug.
2. Meeting a man in the hotel elevator who had a meso name badge, speaking to him and finding out he is Dr. Harvey Pass, the guru of mesothelioma. (We have since had many conversations together.)
3. Hearing the top meso specialists in the world speak about treatment, hope and the future of research.
4. Meeting a researcher who knew who I was because he works on my slides in research.
5. Letting researchers know how important their work is to patients and families.
6. Giving hope to a young mother who came because she had no idea where to turn to and didn’t know what to do next.
7. Putting a face to a name for those who have and will need support.
8. Knowing you are really not alone and there are others who can help.
9. Running out the door, to grab a hold of a doctor who just gave his speech and have him listen and talk to you on a personal level to answer your questions.
10. To meet other caregivers, patients and families affected by mesothelioma.
11. To be able to sit at a table with researchers and doctors and see that they are touched to know patients and families out of a clinical setting.
12. And finally… to meet Mary Hesdorffer, the woman who has helped save so many of us.

Ok so I lied. Not 10, but so many more reasons for you to attend the Symposium. I guarantee you will be so glad you did.

By Bonnie Anderson

FOR THE FOUNDATION: Missy Bowles, Fundraising Champion

Missy Bowles lost her father, Richard O. Dorsey, to mesothelioma cancer in the late summer of 2008; but for this tireless, driven individual, the loss of a loved one to this disease was merely the beginning. It was in 2009 that Missy’s Google search for “mesothelioma support” led her to the Mesothelioma Applied Research Foundation. At this point, she made an oath to do what she could to promote awareness and raise funds for important research into malignant mesothelioma. Three years later, Missy is continuing the fight and nurturing her belief in a cure. “The Foundation was able to direct me back then in my first steps of how to put a fundraiser together,” Missy recalls, “and from that point on it took off.”

As we have blogged previously about creativity in a fundraiser, Missy quickly realized that the only limitation in what she could do to bring to everyone’s attention the severity of mesothelioma was her own imagination and ingenuity. Her 5K Walk, she knew, needed to be something more, so she added to the event a charity gospel sing, raffles and a silent auction featuring local vendors, and food and fun for everyone in the family. West Virginia’s Putnam County has embraced this memorial event and is currently ramping up for the third year of ROD’s Benefit for Meso, happening this year on September 22. “This new tradition,” Mark Hailburn reports for PutnamLIVE.com, “is a hit while lending a helping hand. The event continues to get bigger, better, and brings more awareness to others.”

“Third time is the charm,” Missy states, “Each year we have raised around or a little over $15,000 for research, and this year I plan to top that, reaching a goal of $20,000. This September, Eleanor Town Park in Eleanor, WV will be hosting the event.” At this year’s event, some of the items being given away include Coach purses, Vera Bradley items, fishing gear, dinners, tans, and overnight stays at hotels and bed & breakfasts.

While ROD’s Benefit for Meso sounds like a lot of work (and it is!), Missy’s drive to promote mesothelioma awareness is not limited to just this yearly event. She now organizes a summer event called Smiles for Meso with professional photographer Amanda Crowder. This project is centered around Crowder’s studio offering portrait packages and sitting fees with part of the purchase going to mesothelioma research. But that’s not all.

On August 27, Missy will be teaming up with Buffalo Wild Wings in Nitro, WV for a 5-9 p.m. fundraiser where patrons (dine in or carry out) simply mention “mesothelioma” while placing their order. This will result in Buffalo Wild Wings graciously contributing 15% of that purchase towards the Meso Foundation. And if you think that’s enough for Missy and her summer, think again. All this is just a warm-up as Missy gets ready to work out for mesothelioma awareness and research.

“My first ever Zumbathon for Meso will be held on Sept. 21st in Eleanor Town Park the evening before the big run/walk event. “We will begin at 6pm with Zumba in the Park with my instructor, Katie Toney.” For those unaware, Zumba is a variety of cultural dances, ranging from salsa, merengue, and calypso, turned into a sweat-intensive, multicultural workout. “We will zumba for an hour and break for some items of raffle and then dance for another hour.” With each $15 registration, participants will each receive a tee-shirt and gift bag.

Once her summer events are over, Missy also collaborates with friends from local tanning salon Tanfastiq to create seasonal gifts that are auctioned off throughout the year to keep the need for mesothelioma research funds on everyone’s minds. “We always are blessed with the help and sponsorship of our local communities, and each year it continues to grow.”

And still, Missy is not done.

“I wanted the residents of West Virginia to understand and acknowledge mesothelioma by having a designated day for it,” she says. Last year, Missy contacted the Meso Foundation’s Government Liaison, Jessica Barker. “She provided a lot of guidance,” Missy recalls, “telling me with whom I should start talking.”  With Jessica’s help, Missy contacted House Representative Brady Paxton who was eager to meet with her and begin work on this incredible step forward for the state. She then found herself winning the support of Senator Mike Hall. Within one month of visiting the Capitol, Missy, her mother, and her son were invited to the State Capitol to watch the passage of the resolution for Mesothelioma Awareness Day to be recognized in the State of West Virginia.

With all this, Missy never loses perspective on her motivation. “I am proud of my efforts that my father’s life has pushed me to do, but this will never bring him back,” she states. “He was such and unselfish and giving man that, I know if he could, he would do all he could to help others that face this disease. So in his honor and because he cannot, I will keep fighting for him and for others. I am here to help, guide and give them advice about the next steps to take and whom to contact for help and support.”

From the Foundation, Missy, we thank you for everything you do.

Interested in hosting a fundraiser for the Meso Foundation? For more information on giving of your time and talents in your area and planning your own fundraiser, contact Jessica Barker at (703) 879-3819 or email her at jbarker@curemeso.org. You can also find out more information on being mentored our Fundraising Co-Chairs Shelly Kozicki and Erica Ruble by visiting our website at http://www.curemeso.org.

Empowering the Mesothelioma Community

As the time for the Symposium draws near we are all filled with a sense of excitement.  We strive to build upon the momentum gained in prior years and hope that we meet the expectations of both new and seasoned Symposium attendees.  This year we will have a new roundtable composed of patients and healthcare providers.  In this session I hope that we can identify the strengths that allow those with mesothelioma to continue to lead full and rewarding lives.  What does it take to get from the early days of diagnosis to becoming a whole and healthy person who also happens to carry the diagnosis of mesothelioma?  Knowing that you have an incurable disease, do you hope for the best and prepare for the worst?  Is that even possible?  I hope to explore these questions with patients. I also wish to open a dialogue about what it takes to be on the other end of the exam table, as a provider, charged with delivering the news, and then providing hope with reality.  It is a fine balance and the providers we have chosen to partake in this discussion are known for their compassion and honesty.  I hope that by exploring the patient and provider experience we can come away with better communication skills and a better understanding of what it takes to fill either set of shoes.

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