Upcoming Telephone Workshop: Fundraise for Meso

Fundraise for MesoWe have recently announced that we will be holding a telephone workshop about organizing your own fundraising event for mesothelioma. If you ever thought about hosting an event to benefit the Meso Foundation, this is your opportunity to get an inside look and have your questions answered for “how to” plan your very own mesothelioma event.

The workshop will take place via a conference call over the phone, on which you will learn about hosting an event and be able to ask questions. By attending the telephone workshop, you will have your questions answered by the Meso Foundation Development Team.

Some of the topics that we will be discussing are event planning and coordination, letter writing campaigns, company matching opportunities and most importantly answering all your questions.

Mesothelioma Awareness Day is around the corner on September 26, and this is a great time to get involved and host your very own event to benefit the Meso Foundation.

The Telephone Workshop: Fundraise for Meso will be held on August 26, 2015 at 8PM EST. Click here to register, and please e-mail Erica Ruble at eruble@curemeso.org to receive the call-in information.

Using Situational Awareness in DIY Project Safety

Home Repair“Do it yourself” (DIY) projects are those that you undertake on your own without the help of experienced professionals. Commonly, a DIY project may include building, repairing, home improvement, or maintenance activities. While this type of project can be enjoyable, cost-effective, and so on, it comes with a risk of exposure to hazardous materials such as asbestos. It is important that you are aware of what you may encounter and know how to handle it. Before you begin a DIY project, incorporate the concept of situational awareness into your safety plan.

In the first part of this three-part blog series, Situational Awareness was defined as the concept of knowing and being aware of what is around you. Before you start any project, make a plan that includes situational awareness and our STOP-LOOK-THINK method, which is outlined below:

Engage your thought process before you act, and evaluate the situation. For example, do not begin to knock down a wall without considering the materials that may be let loose into the air. Is there a chance that asbestos is present? Here are some indicators for identifying possible asbestos in your home:

  • Homes built before 1980
  • Cement roofing, shingles and siding
  • Electrical meters and wiring
  • Cement sheeting both internal and external walls
  • Pipe insulation
  • HVAC insulation
  • Vinyl flooring and tile glue/ Mastic
  • Linoleum flooring
  • Chimney Flues
  • Textured ceilings
  • Insulation
  • Insulation and gaskets on older furnaces

Scan the entire space for possible hazards.

  • Know how to identify possible asbestos-containing products.
  • Are there any noticeably hazardous materials present?
  • If you suspect hazardous materials, consult a state EPA certified trained professional for removal.
  • Keep a journal and diagram of all possible asbestos-containing materials.

Consider the consequences of venturing into unsafe conditions and determine the proper safety equipment.

  • Understand the consequences of improper asbestos removal and disposal.
  • Know the risks that are associated with asbestos exposure, including diseases such as mesothelioma.
  • Consider that you are not only putting yourself at risk, but also those nearby or in contact with you.
  • Improper disposal or dumping of asbestos products may cause asbestos exposures and disease for decades.

There is nothing more satisfying than sitting back and enjoying the end result of a DIY project. This can be made even more satisfying if you know that the project was completed with ALL of the proper safety measures. Upon project completion, we have our before and after pictures on which to look back, but it is the time between the photos that is truly important. If proper safety measures were not used, the time spent on the project could have negative consequences, notably on your health. Asbestos exposure can ultimately lead to mesothelioma diagnoses if proper care is not taken during projects. This is why we want to focus on preventing asbestos exposure during DIY projects through the use of situational awareness and the STOP-LOOK-THINK method.

If you think a product may contain asbestos, treat it as asbestos until proven otherwise!

Click here to read part one of the situational awareness blog series. To learn more about our prevention program, visit curemeso.org/asbestos.

Benefits, Privacy, and Implementation of the Mesothelioma Patient Registry

Doctor speaking to patientLast week, we announced the important news that Congressman Katko introduced in Congress a bill to create a mesothelioma registry. You can read the news announcement here, and the full text of the bill here.

The creation of a registry for mesothelioma is crucial for the advancement of the mesothelioma science and development of effective treatments for this cancer. Other conditions, diseases, and cancers have seen incredible progress and increased life expectancy of their patients as a result of registry implementations. Patient registries have played a crucial role especially for diseases that are considered rare and for which scientists have a difficult time accessing enough data to conduct their research (or, for example, for which it is difficult to find enough patients to enroll in clinical trials in order to complete them). Researchers around the world need disease registries to bring together information about relatively rare diseases, such as mesothelioma. To that end, the Global Rare Diseases Patient Registry Data Repository (GRDR®) is a process that allows the creation of a registry for any rare disease population.  The needs and background are explained here by the NIH.

The language in the ‘Mary Jo Lawyer-Spano Patient Registry Act of 2015’ states:

The Secretary shall ensure that privacy and security protections applicable to the registry under this section are at least as stringent as the privacy and security protections under HIPAA privacy and security law (as defined in section 3009).”

The goal of a patient registry is to provide scientists with information they need to advance their research. However, this information is strictly safeguarded and only made available to scientists through a process by which they have to apply and demonstrate their particular relevant and valid need for these data. Also, all data is de-identified, meaning that patients’ names are stripped away from other information, and are instead replaced by unique numbers.

De-identification is the process used to prevent a person’s identity from being connected with information. Common uses of de-identification include human subject research for the sake of privacy for research participants.

The language in the bill itself requires that the registry be created in consultation with the following experts in mesothelioma and registry creation:

“(1) epidemiologists with experience in disease surveillance or registries;
“(2) representatives of national voluntary associations that focus on mesothelioma or have demonstrated experience in research, care, or patient service for mesothelioma;
“(3) health information technology experts or other information management specialists;
“(4) clinicians with expertise in mesothelioma; and
“(5) research scientists with experience conducting translational research or utilizing surveillance systems for scientific research purposes.

General Patient Registry Information
To learn more about patient registries, please visit the following links on the National Institutes of Health (NIH) website:

Registry FAQs by the National Institutes of Health

How Do Registries Work?

Take action now, and ask your congressional representative to support this bill!

ACTION ALERT: Mesothelioma Bill in Congress for Patient Registry

Advocates on Capitol Hill

We have big news and need your help! Today, the ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015’ was introduced in Congress by Congressional Representatives John Katko (R-NY), Jan Schakowsky (D-IL), Chris Collins (R-NY), Peter King (R-NY), Betty McCollum (D-MN), Joe Kennedy (D-MA), and Leonard Lance (R-NJ). This bipartisan bill would establish the nation’s first formal federal registry to track mesothelioma patients. This would provide scientists with adequate clinical data to assist in their research.

This bill came about as a result of our March 2015 Symposium’s Advocacy Day when Meg Meccariello and her mother Elizabeth Lawyer met with Congressman Katko. The Lawyer family has been greatly impacted by mesothelioma. Meg, who is a mesothelioma patient herself, has lost her father Charles Lawyer and her sister Mary Jo Spano (after whom this bill is named) to mesothelioma. Another one of her siblings has also been recently diagnosed.

“Unlike many chronic and rare diseases, there is currently no national registry available for mesothelioma patients,” said Rep. John Katko. “These registries collect and consolidate information about individuals who suffer from the disease and provide health care professionals, researchers, and patients with the ability to search information about diagnosis, as well as track disease trends, risk-factors, and treatment availability.”

While the introduction of this bill is an important accomplishment for the mesothelioma community, our work is not yet done – we need your help! In order to ensure passage of the bill through the House of Representatives, it is critical for other Representatives to announce their support for the legislation as well.

Please use our Action Center to email your congressional representative and urge him/her to co-sponsor the ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015′. If you prefer to call your representative, you can use our website to find their contact information.

Below are some brief talking points that you can use:

  • Mesothelioma is a deadly form of cancer linked to exposure to asbestos for which there is no cure.
  • The five year survival rates are less than 10%.
  • Currently, there is no formal federal registry to keep track of mesothelioma patients.
  • The ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015′ would establish the first ever federal mesothelioma registry, providing clinical trial information, clinic information, and reports to help researchers identify and develop a cure to this deadly disease.
  • I urge you to co-sponsor this important legislation. Linked here is a ‘Dear Colleague’ letter circulated on Capitol Hill to garner further Congressional support that includes more information about the bill. Again, thank you very much for your support. Please do not hesitate to contact me with any questions you may have.

Click here to take action now!

Wear Your Support: The New Meso Foundation Store

Store Products SampleWe are beyond excited to introduce to you the new Meso Foundation Store run by GoodThreads. Our new store features a variety of products and designs, many of which are customizable. The best part: whenever a product is purchased, the Meso Foundation receives a $5.00 donation.

Many of our available designs allow users to customize them by inserting a name or a photo of the individual they wish to honor or memorialize. Similarly, our event organizers can customize their products with their event’s theme and name.

When you land on the store home page, simply click the “Get Started” button to begin the process. Now, you can choose from 11 different designs. A range of design options are available, including basic “curemeso.org” logos, customizable event-specific “5k for Meso” and “Music for Meso” logos, simple designs that display your dedication to finding a cure for mesothelioma, and more.

Once you choose a design you like, you will be able to choose the product you want to purchase. Products are available for both men and women, including standard t-shirts, long sleeve t-shirts, pullover and zip-up hoodies, micro performance t-shirts, v-neck t-shirts, polo shirts, and more.

Products are available in a variety of colors as well, many of them in blue. There are a number of great options for you to wear on September 26 for Mesothelioma Awareness Day as we paint the world in meso awareness by wearing blue! Click here for more information about how to get involved on Meso Awareness Day.

After you choose your product and the color you prefer, you can either customize the design (if you chose a design that allows for this) or continue on to make your purchase. Once you enter the checkout process, you will see that a donation amount of $5.00 is included in the purchase price. You will have the option to make a higher donation if desired.

With our new store, we hope to raise more mesothelioma awareness and funds. The donations made via product purchases will go towards our mesothelioma research grant program, education and prevention programs, patient and family support programs, and our advocacy efforts. For a more detailed rundown of how donations are used at the Meso Foundation, click here.

Visit the Meso Foundation Store now to get started!