New Mesothelioma Support Groups Schedule Announced

SupportThe Meso Foundation has announced a new schedule for online and over-the-phone support groups. This new schedule will improve user experience and allow more participants to take advantage of this free-of-charge service.

Currently, the Foundation offers online support groups through private Facebook groups for patients, caregivers, and those who have lost a loved one to mesothelioma. This method of participation is available 24/7 and is immediate. To ensure privacy and a safe environment, all participants are screened before they can be added into the groups.

Telephone support groups, available at regular intervals, offer a more traditional support model through moderated calls that allow participants to listen and share as much as they’re comfortable. Participants in these groups are also screened prior to receiving the call-in phone number.

If you would like to join either the online or over-the-phone support groups, please contact Mary Hesdorffer, NP, at (703)879-3820 or mary@curemeso.org.

Listed below is the updated schedule for over-the-phone support groups:

The caregiver support group, Caregiver Conversations, hosted by Mary Hesdorffer, will meet the 2nd Saturday of every month at 11am EST.
Upcoming dates for Caregiver Conversations:
May 10th, June 14th, July 12th, and August 9th

The support group for all patients, Warrior Voices, hosted by Mary Hesdorffer, will meet the 3rd Saturday of every month at 11am EST.
Upcoming dates for Warrior Voices:
May 17th, June 21st, July 26th, and August 16th

The spousal loss support group, hosted by Miriam Ratner and Judith Hicks, will meet the 1st Tuesday of every month at 9pm EST.
Upcoming dates for the spousal loss support group:
May 6th, June 3rd, July 21st, and August 5th

The Mesothelioma Christian Prayer Group, hosted by Reverend Eric Linthicum and Ginger Horton, will meet the 4th Wednesday of every month at 9pm EST.
Upcoming dates for the prayer group:
May 28th, June 25th, July 23rd, August 27th

An up-to-date schedule of over-the-phone support groups can be found at curemeso.org/support.

Introducing Meso-Connect: A Peer-to-Peer Support System

Meso-ConnectThis week, the Meso Foundation launched Meso-Connect, a peer-to-peer support system aimed at helping mesothelioma patients and their families to combat isolation by connecting them with peers who are going through, or have been through, a similar experience.

Due to the rarity of mesothelioma (3,500 patients diagnosed each year in the United States) and the aggressive nature of this cancer, most patients feel alone in their fight. For mesothelioma patients, even just obtaining a diagnosis can often be a long process. Finding a specialist and the prospect of drastic surgeries, chemotherapy, and radiation can be even more daunting. For this reason, we have developed Meso-Connect. Through Meso-Connect, the Foundation identifies and connects individual mesothelioma patients and/or their caregivers with members of the mesothelioma community who “have been there, and have done that.” All participants in the program are carefully screened to ensure a safe experience and fit.

This service is aimed at patients in all stages of a mesothelioma diagnosis. For a patient in the early stages of surgical recovery, for example, speaking with a peer who has successfully recovered may provide hope and inspiration. Additionally, the program is also available to caregivers, as well as those who have lost a loved one to meso.

Meso-Connect is also beneficial for those members of the mesothelioma community who choose to be on the helping side. Speaking with patients who need guidance can provide them with a sense of purpose and can serve as a reminder of their own progress.

To participate in Meso-Connect, either as someone receiving help or as someone providing help, patients and families must first register. Once signed up, each participant will be thoroughly screened. Those registrants who indicate they are willing to help others will receive training and guidance prior to their assignment. All participants are expected to comply with the terms, rules, and regulations of the program.

More information about Meso-Connect is available at curemeso.org/mesoconnect.

Facebook Exhaustion?

exhaustion_small

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.