New User-Friendly Meet the Mesothelioma Experts Web Page Released

Meet the Mesothelioma Experts Web PageThe Meso Foundation has released a new version of its web page about the Meet the Mesothelioma Experts live broadcast series, which makes the recordings of this educational series user-friendly and easier to access.

Each recording is now listed with a photo of the speaker, the title of the session, and a brief description of the topic of discussion. Users can select the recording they want to listen to, which will lead them to a user-friendly audio player accompanied by a more in-depth description of the session and speaker.

The Meet the Mesothelioma Experts series is a live teleconference with the goal of providing patients, their family members, and other interested parties with the most up-to-date information on mesothelioma treatment and research, directly from the physicians pioneering these advances. After the live teleconference, each session is available as a podcast for users to listen to on the Meso Foundation website. Past podcasts have featured:

  • Dr. Lee Krug, Memorial Sloan Kettering Cancer Center
  • Dr. Dan Sterman, University of Pennsylvania
  • Dr. Raffit Hassan, National Cancer Institute
  • Dr. Julie Brahmer, Johns Hopkins
  • Dr. Tobias Peikert, Mayo Clinic
  • Dr. Joseph Friedberg, University of Pennsylvania
  • Dr. Valerie Rusch, Memorial Sloan Kettering Cancer Center
  • Melissa Culligan, RN, University of Pennsylvania
  • Dr. Evan Alley, University of Pennsylvania
  • Dr. Joanna C. Horobin, Verastem, Inc.

The topics of past sessions have included immunotherapy, gene therapy, drugs, clinical trials, and biomarkers. Topics are discussed through an informal interview, focusing on questions important to patients in particular. Listeners are encouraged to ask questions while listening to the call.

To view the newly released web page and listen to past Meet the Mesothelioma Experts podcasts, visit curemeso.org/experts.

Expanded Financial Assistance for Travel Expenses of Mesothelioma Patients

TravelLast week, we announced the expansion of our Travel Grant program for mesothelioma patients. The program, which was created initially to help mesothelioma patients who are in need travel to see a specialist for the initial consultation, will now also accept applications to cover traveling expenses of patients enrolled in clinical trials away from home, or those seeking new consultation following relapse. Each grant of up to $1,000 can cover lodging, transportation, and meals.

Mesothelioma treatment requires the expertise of a specialist who has extensive mesothelioma experience. Such experts are available at a limited number of centers, access to which often requires the patient to travel. Mesothelioma patients can greatly benefit from consulting with an expert. In many cases, following the initial consultation, the mesothelioma expert will be able to work with the patient’s local physician to guide them through a more specialized treatment.

“The Meso Foundation believes that every patient should have the chance to be seen by an appropriate mesothelioma expert, regardless of their ability to pay,” said Mary Hesdorffer, the executive director of the Meso Foundation and an expert nurse practitioner.

To qualify for the grant, a patient must show significant financial need and fit in one of the following categories:

  • Patients who must travel to receive expert care or an expert consult on their mesothelioma, and cannot afford to do so without assistance. Repeat visits are not covered unless patients are enrolled in a clinical trial.
  • Following treatment by a specialist, the patient has relapsed and needs to explore a new option of treatment or clinical trial.
  • The patient has enrolled in a clinical trial and does not have the financial means to travel to appointments. We recognize that clinical trial participation requires multiple visits and will consider each visit as a new application.

More information about the Travel Grant program can be obtained by contacting the Meso Foundation at (877)636-6376 ext. 3821 or by emailing Dana Purcell at dpurcell@curemeso.org.

Visit curemeso.org for more information about mesothelioma.

GUEST BLOG: Sarah Lackner Attends the Charlie Cole Golf Classic

Lynn Cole and Sarah Lacknerby Sarah Lackner

I spent the third weekend in May in Asheville, North Carolina on behalf of the Meso Foundation at the 3rd Annual Charlie Cole Golf Classic hosted by Lynn Cole, along with her children, Matt and Katie, in memory of her husband, Charlie, who lost his battle with mesothelioma on March 31, 2010 after only 17 months.

I hadn’t met the Cole family prior to this weekend, but what occurred during that quick less-than-48-hour trip is exactly what the Foundation is about. The warmth and strength that the family displayed, their incredibly supportive and loving friends, as well as other local meso community members all contributed to making the day an absolute success.

Not only was I able to thank the Cole family for their commitment, their friends and family for their support, I was able to spend time truly connecting with each of them. Katie and I were the same age when we lost our parent and zipping around on the golf cart gave us a few hours to share our experiences, both of the loss and of life after the loss. Later that evening, Matt and I were able to also have those conversations that only occur with someone who has been through what we as a community go through. C.S. Lewis says that friendship is born that moment when one man says to another “What? You too? I thought that no one but myself…”

Charlie Cole Gold ClassicThis event was, for me, everything that the Foundation works for: supporting research, education, support, and advocacy programs through raising funds and awareness as well as bringing together those affected by mesothelioma. It takes what is often an isolating disease and provides a place where if you want to talk about it, everyone understands, and if you don’t want to talk about it, everyone understands.

Thank you, so much, Lynn, Matt and Katie for allowing me to share the weekend with you. And thank you for believing in and working towards a cure.

Update on Mesothelioma: A CancerCare Teleconference

CancerCare Update on MesotheliomaOn Monday, June 30 from 4:30-5:30PM Eastern Time, CancerCare is hosting a free mesothelioma teleconference workshop. The teleconference, titled Update on Mesothelioma, will feature a panel of experts to discuss numerous topics related to the disease. Registrants will be able to listen in on the phone or through a live stream online.

The Update on Mesothelioma teleconference will cover topics including mesothelioma treatment choices; the role of clinical trials; managing side effects, discomfort and pain; communicating with your health care team; quality of life and life style concerns; and physical activity and nutrition issues and tips. Questions for the panel of experts will also be accepted.

The panel of experts consists of four individuals: Richard J. Gralla, MD, FACP, Professor of Medicine, Albert Einstein College of Medicine; Lee M. Krug, MD, Director of the Mesothelioma Program, Associate Attending Physician, Division of Thoracic Oncology, Department of Medicine, Memorial Sloan-Kettering Cancer Center; Mary Hesdorffer, MS, APRN-BC, Nurse Practitioner, Executive Director, Mesothelioma Applied Research Foundation; and Winfield Boerckel, MSW, MBA, Director of Social Service – Long Island, Lung Cancer Program Coordinator, CancerCare.

Mary Hesdorffer, MS, APRN-BC, is an expert nurse practitioner with over 16 years of experience in mesothelioma treatment and dozens of published articles in a variety of scientific journals. She is the executive director of the Meso Foundation and the first line of help for patients and caregivers faced with a mesothelioma diagnosis.

Lee M. Krug, MD, is an Associate Attending Physician in the Division of Thoracic Oncology, Department of Medicine at Memorial Sloan-Kettering Cancer Center in New York, New York, where he completed a fellowship and chief fellowship in medical oncology. Dr. Krug is the Director of the Mesothelioma Program at Memorial Sloan-Kettering Cancer Center. He is also the chair of the board of directors of the Meso Foundation.

To register for the free Update on Mesothelioma teleconference workshop, visit CancerCare.org.

Volunteers Needed: Meso Foundation’s Water Stop at NYC Marathon

nycmThis year, the Mesothelioma Applied Research Foundation has an opportunity to staff the water stop at Mile 19 of the New York City Marathon. This is an official water stop of the marathon and is a tremendous opportunity to raise awareness of our cause at such a world-famous event. This event features over 50,000 runners, and over 2 million spectators.

The marathon will take place on Sunday, November 2, and the volunteers are expected to be there between the hours of 7:30 AM – 3:30 PM.

Due to planning and security concerns, all interested volunteers must register online by July 31, 2014. No walk-ups are allowed.

If you are unable to volunteer, but still wish to participate in this event, you can give to the NYC Marathon water stop fundraising page curemeso.org/fundraising/nycmarathon.

The registration process outlined below requires several steps, so if you need help registering, please contact dpurcell@curemeso.org.

STEPS TO REGISTERING AS A VOLUNTEER FOR THE NYC MARATHON

If you are ready to VOLUNTEER for the 2014 TCS New York City Marathon, FOLLOW THE STEPS BELLOW:

1)    Follow the link https://mynyrr.nyrr.org/login and register with New York Road Runners (NYRR). 

If you need additional registration help, visit: http://www.nyrr.org/my-nyrr-getting-started

2)    Once you register, you will receive a confirmation email. Please follow the link in the email to finish setting up your account. (Can’t find the confirmation email? Check your spam folder!  Have Gmail?  Look in your promotions folder!

3)    Now, log in to your account and from the main page select VOLUNTEER, and select the area you’d like to volunteer in.

4)    Scroll to the volunteering event of your choice and select the radio dial to the left. Scroll down the page and click NEXT.

5)    Complete the missing information and click ACCEPT AND VOLUNTEER

Once you complete all the steps, you’ll receive a confirmation email from NYRR.

During the week leading up to the race, you’ll receive specific information about your assignment, and about what will happen on race day.