Meso Foundation Program Expenditures Increased to 86% of Budget

Fiscal ResponsibilityAn audit of the Meso Foundation’s 2013 financial statements confirmed an increase of program expenditures to 86% of the Foundation’s budget. Consequently, the amount spent on management and fundraising has decreased to 5% and 9%, respectively.

“We are very proud of this result. When compared to other excellent charities, we spend at least 11% more than they do on programs,” said Melinda Kotzian, the chief executive officer of the Meso Foundation. “Most importantly, this number shows our donors our dedication to the development of life-saving treatments and services for our mesothelioma-affected community.”

The Meso Foundation is the only mesothelioma-related charity to hold a 4-star rating by Charity Navigator and the only mesothelioma charity accredited by the Better Business Bureau.

The complete set of audited 2013 financials will be available on the Meso Foundation’s website in the “About Us” section under “990 Forms and Audits.”

Visit curemeso.org to learn more about the Meso Foundation’s impact.

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.

New Mesothelioma Support Groups Schedule Announced

Find information about Mesothelioma support groups.The Meso Foundation has announced a new schedule for online and over-the-phone mesothelioma 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 mesothelioma 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.

Meso Warrior Bill Ziegler Selected as Survivor Advocate

Ziegler Family

In July 2011, Bill Ziegler was diagnosed with pleural mesothelioma at the age of 33. With three young children, including a new baby with his beloved wife Kate, he was determined not to go down without a fight. Bill has undergone chemotherapy, has had a pleurectomy, radiation and WT-1 immunotherapy. This fighter’s spirit led the Meso Foundation to nominate Bill to represent the meso community as a Survivor Advocate within the greater cancer community.

Bill is representing the mesothelioma community as a Survivor Advocate at the 7th Biennial Cancer Survivorship Research Conference: Advancing Survivorship Care through Multilevel Collaboration in June after being nominated by the Meso Foundation. He was one of twenty survivors accepted out of 100 applications. Survivor Advocates will learn about the latest advances in survivorship care and how to improve the quality of life for cancer survivors.

Bill wants to attend this conference because he feels “that you can never have too many resources or be educated enough. Whether it is for treatment, living a better quality of life, or to know what the future holds.” Bill plans to share what he learns with the mesothelioma community. He hopes that his attendance at the survivorship conference and the sharing of his learnings will inspire and encourage his fellow meso warriors.

“As a survivor of an extremely lethal type of cancer,” says Bill, “I feel that I have a responsibility to motivate others to take control into their own hands and make great decisions, while living life to its fullest.”