Hope in the Big Apple: The Meso Foundation’s “Knowledge Is Hope” Conference

It doesn’t seem that long ago that we were all in Washington D.C., coming together for the 2012 Symposium. After such a successful and inspirational event, what does the Meso Foundation plan for next?

How about a one-day event on the week of Mesothelioma Awareness Day? That is exactly what we plan!

On September 28, 2012, on the heels of Mesothelioma Awareness Day, the Meso Foundation (with a generous educational grant from Levy Phillips & Konigsberg, LLP) will proudly present “Malignant Mesothelioma: Knowledge Is Hope.” This is a one-day conference in New York City, NY, focusing on patients, families, doctors, and anyone wanting to understand more about malignant mesothelioma. It’s a jam-packed day-long agenda includes:

  • A return to the Plaza for raising awareness during the Today show
  • Sessions on standard treatments, ongoing research, complementary therapy, environmental/occupational exposure risk, and legal implications
  • Morning presentations featuring Lee Krug, MD; Marc Ladanyi, MD; Harvey Pass, MD; Kenneth Rosenzweig, MD followed by a questions and answers panel
  • Afternoon presentations by Garrett Nash, MD; Robert Taub, MD; Mary Hesdorffer, NP; Kathleen Wesa, MD; Jacqueline Moline, MD; and Robert Komitor, Esq.
  • Musical entertainment by Leon Pendarvis, musical director of Saturday Night Live
  • …and much more.

“Knowledge Is Hope” brings top experts in mesothelioma from the New York area to the Harvard Club of New York City, located on 35 West 44th Street, New York, for a day of education and awareness. This event promises to be a day of information, a day of science and research, and a day of discussions over the recent advances in mesothelioma treatment.

Registration is $25 per person (includes all sessions, breakfast and lunch). Register by clicking here or by calling the Meso Foundation at (703) 879-3797. Registration fees will be donated back to the Meso Foundation. Availability is limited. You must register before our deadline of September 10.

Knowledge is hope. Join us for this incredible day in New York City.

Social Media Moment: Hiding Your Friends on Facebook

We have talked before about the importance of not sharing everything on your Facebook page. What tends to be the most common mistake in social media (regardless of the platform) is sharing too much or simply sharing with the wrong people. So it’s always good to take precautions.

Did you know, though, that you could be sharing without realizing? This unknown, and sometimes unwanted swapping of data is due to the default settings of your Facebook account. Once you have signed up, created your online identity, and logged on, Facebook already has you sharing more than just your favorite photos and current check-in’s. It’s also sharing those people in your network.

Why is this important to control?

You may want to be open and public with your own opinions, but there is the matter of friends you may want to keep hidden from the same public eye. You may not want to openly share with the world the people that populate your network. With your Friends list complete open to the public, anyone — anyone — can go through your Friends gallery, click on any name, and request a connection. If you know that you have a friend that may be a touch shy and unwilling to meet new people on a whim; or if you are protective of your network and wish to only share its membership with people you really know, protecting your Friends on Facebook is quite easy.

  1. Go to Facebook and log in (if you are not logged in already).
  2. Go to top-right corner of your Facebook page, there is a menu there that has your name, Find Friends, and Home. Single-click on your name. (You may also see your name under the “Facebook” logo at the top-left of your screen. You can click that, too, as that link also takes you to the right place.)
  3. You should see your “Friends” gallery to the right of your Statistics (your job, where you’re located, where you went to school, etc.). Go on and single-click your Friends gallery to enter it.
  4. At the very top of your Friends list, you will see towards the upper-right (just underneath your name) two buttons: “Edit” and “Find Friends.” Single-click the “Edit” button.

  1. A window appears that reads “Who can see your full friend list on your timeline?” and also shows (by default) a small icon of the world. Single-click the “globe” icon to reveal your options.
  2. In this drop menu of options, you can either have your Friends be:
    1. Public: This means everyone is visible to people who are friends with you and with casual people just looking at your webpage.
    2. Friends: Only your approved Friends will have access to your Friends list.
    3. Only Me: This option will make your Friends completely Private, so you and only you will be able to see your network.
    4. Custom: This takes a bit more planning but here you can make your Friends visible to the people in your network, just you, specific lists you create, or people tagged in photographs. Another option offered here is you can hide your Friends from specific people or lists in your network.
  3.  Choose your option and the “Edit” window closes automatically.

This is how you can keep your Friends and your network secure from unwanted attention. By locking down your network (the tightness of that lockdown clearly up to you), you can now protect your friends from unwanted or unwarranted contacts. At the Meso Foundation we know how serious you take your privacy, and if you are concerned about the privacy of your friends, as well, we are here to make sure when you update a status or share a photo, you do so safely and securely.

That addiction to Farmville, however…no, we can’t help you there. Sorry.

For more information on available resources and online communities, visit our website at http://www.curemeso.org.

REMINDER: Facebook Support Groups — Both Sincere and Secure

If you are new to the Meso Foundation or perhaps old friends with us but new to social media, you might not know that we actually host several Facebook groups. Just to explain, Facebook Groups are a lot like our Support Groups, only they take place on the popular social network.

Meso Foundation Fan Page
Status: Public
This is the official Facebook page of the Mesothelioma Applied Research Foundation. When it appears on this page, the news and message of the information is coming straight from us. People who “Like” the Meso Foundation page subscribe to its updates, and posts from is appear in your News Feeds. Subscribers to the Page are able to post their own messages and comments, but Subscribers’ posts are displayed in a shortened form in a “Recent Posts from Others” section. The highlighted stories and prominent posts appearing come from representatives of the Foundation. This Page is open to the public.

Cure Mesothelioma Group
Status: Public

Unlike the Meso Foundation’s Fan Page, posts, pictures, and other media featured here are all driven by the members of the group. The posts and made here will be featured up front and center on the group page, making it more of an online community than a Page, as described above. This group’s content is similar to our Fan Page as it features new and developments in the meso community, focusing on research. Community members can also post news and developments here they wish to share with the community on a whole.

While we welcome and encourage community, the Meso Foundation also takes your privacy very seriously. Keeping that in mind, we have created secret groups that offer an extra amount of security. In these groups, only approved members are able to see the group’s roster and what is posted. This extra level of security is your assurance and our promise to you that no one will be able to take advantage of your data or personal situation.

Mesothelioma Survivors and Caregivers
Status: Secret
The Mesothelioma Survivors and Caregivers group was created for patients and survivors of mesothelioma, or for those who care for patients of mesothelioma. This group is a safe, secure haven for people to come and share their stories and struggles in privacy, without pressure, hosted by our Nurse Practitioner, Mary Hesdorffer.

Mesothelioma Caregiver Conversations
Status: Secret
This group, also private, is for those in the meso community carring for a loved one, and wish to share and connect with others. All conversations here are welcome, no subject taboo, and kept confidential. Hosted by Nurse Practitioner Mary Hesdorffer, we ask that the conversations and comments are kept kind and gentle in order to keep stress at a minimum. Also welcome in this group are victory celebrations and those seeming comfort during difficult times.

Exploring Alternative and Complementary Therapies
Status: Secret
Hosted by Lisa Crandall, this forum caters to individuals wanting to share their experiences with alternative therapies. Mary Hesdorffer has described her role in this group as follows: “Unless medical input from me is requested, I will remain a silent observer. I respect your right to decide what is best for you and your loved one and hope that you put this room to good use.”

Please note that discussions in these groups tend to cover treatments more commonly found in the United States and Canada, although international participation and input is welcome. We offer these groups as secure, online havens for those who continue to believe in a cure. Admission to our public groups are open to all. Secret group memberships are extended by invitation and admin approval only, in order to protect the integrity and privacy of its members.  If you wish to join one of the secure groups, please contact Mary at mhesdorffer@curemeso.org or call the Foundation at (877) 363-6376 or consult our website for details.

We hope to talk to you soon.