Cancer Research Awareness Month: Peritoneal Mesothelioma

Screen Shot 2012-06-11 at 3.59.39 PMBy Mary Hesdorffer, Nurse Practitioner and Executive Director of the Meso Foundation

In 1996 I began my career in clinical research which ultimately led to a focus solely on mesothelioma clinical research. At that time, there was no standard of care and clinical trials were being developed that would lead to some significant changes in the way we approach mesothelioma. Peritoneal mesothelioma trials were being written and patients enrolled. Today many of those patients are alive and able to share their experiences from those early efforts. Researchers and patients can now share their collaboration while traveling together through uncharted territories.

During those early years, Hyperthermic intraperitoneal chemotherapy (HIPEC) was being tested at a select number of centers around the country and has now become the standard of care in peritoneal mesothelioma. HIPEC refers to a procedure which starts with a debulking surgery (visible evidence of disease is removed along with a number of involved organs) that is followed by a heated profusion of chemotherapy, delivered directly into the abdomen in an attempt to kill any microscopic disease not removed during the surgical portion of the treatment modality.

The careers of some of the leading doctors in mesothelioma were being established and I am proud to say that most have remained focused on the care of patients with mesothelioma.  In 2004, the first ever international meeting focused on peritoneal mesothelioma took place. I was one of the participants and there was a sense of excitement in the room as we looked around and realized how many brilliant minds were focused on the treatment and understanding of peritoneal mesothelioma. Research has continued with a focus on the type of drugs used during HIPEC as well as ways to augment the response. Doctors are now studying the use of both HIPEC and intravenous therapy to see if they can continue to push the response and survival of those with peritoneal mesothelioma. We know what we do today due to the courage of those early patients and the brilliance of those early pioneers in mesothelioma research.

I refer mainly to these doctors though HIPEC has now been introduced and used for a variety of other cancers. I believe it is important that the researchers have access to tissue,  learn more about the lived experience of mesothelioma through interaction with mesothelioma families, and that new deliveries and new drugs continue to be tested to build upon what we already know. The Mesothelioma Virtual Tissue Bank is a vital resource to our community and our researchers are the ones who maintain and enrich the bank. If patients are directed to non-mesothelioma research centers then this precious source of data and information will be lost.

I have been part of the historical development of mesothelioma and it is my role to see to it that research continues to be funded and patients continue to be supported as they explore their clinical trial options.

If you would like to learn more about mesothelioma research or peritoneal mesothelioma, ask a question through our Ask the Expert feature now.

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.

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.

FOR THE FOUNDATION: Ridin’ The Wind with Rob

Fundraisers come in as many varieties as there are interests. Fundraisers are also tributes to the people that inspire them; and for Jill Cagle, her special event this weekend is not just about raising awareness for mesothelioma research. It’s a celebration of a life well lived. This fundraising event is “Ridin’ the Wind with Rob,” happening this Saturday, July 28.

Jill’s husband, Rob Cagle, was an avid rider. Whether it was a Harley-Davidson motorcycle with its signature roar or something more serene like a ten-speed bike, Rob loved to feel the wind in his hair and the sun on his skin, prompting his favorite turn-of-phrase, “It’s All Good.” Jill wanted to celebrate that love of the open road alongside the memory of her husband and so she put together this family-friendly event happening this weekend in Pekin, Illinois. Whether you ride a Harley, a Yamaha or simply wish to ride your car, you are invited to take part in this, 91-mile long, ride (or drive) for meso awareness. “We have a variety of events planned for the day,” Jill promises. “We’ll be registering your vehicles between the hours of 11 a.m. and 1 p.m. and for the kids we will have games to play. If you’re not riding, we’re also raffling off donations from local vendors and holding a bake sale. We’ve got something for everyone.”

“Ridin’ the Wind with Bob” is more than just an open ride through the streets of Pekin. Starting at 4 p.m. at Goodfellas will be a spaghetti dinner, a $6 charge for anyone 13 or older, $4 for kids between 4-12. “This event will be, I think, very much like Rob’s spirit,” says Jill. “This will be fun for all ages and people will bring out their favorite set of wheels and enjoy a day in the sun. This is how he would want to reach people — not with fear or anger, but with a positive, fun attitude, showing people the best way to stand up against mesothelioma cancer — by living.”

“Ridin’ the Wind with Rob” will happen this Saturday, starting at 11 a.m. (with a blessing of the bikes at 11:30 a.m.) and will last all day. The spaghetti dinner is at Goodfellas from 4 p.m. to 7 p.m. For more information on this event or to make a donation in Rob’s name, call Jill at 309-267-3155. For more on upcoming events in the meso community, visit our website at CureMeso.org.

FOR THE FOUNDATION: Students Overseas Sponsor Summer Bazaar to Raise Awareness for Mesothelioma

Students at the Kuwait American School (KAS) organized a charity expo on April 28th to raise awareness for mesothelioma research. After their beloved school director Mrs. Wajeeha Al Habib fell to mesothelioma cancer, the student body rallied and proposed to the school the idea of an open bazaar. Thirty small businesses sold their services and unique products to guests. Booths comprised of businesses offering desserts, summer programs, accessories, and others, with the entrance fee and booth rent given to a “Cure Mesothelioma” booth organized and run by the student body. Even with such a short period of planning, KAS gave their students full support for this heartfelt idea, and allowed for the collection of donations at the Cure Meso booth.

Have a look at the KAS publication StudenTalk magazine’s “Activities That Stand Out” to read their own coverage of the event.

Raising funds and awareness about mesothelioma cancer isn’t easy, and still people want to know more about how to organize an event. We see that in the amount of people visiting our 6 Tips on Planning Your Own Fundraiser blogpost. It’s when you hear stories from Erica Iacono and Janice Malkotsis, you discover, that planning fundraisers is simply answering a call. When it comes to this the KAS student body displayed the drive and spirit needed in doing just that, and taking an idea to full fruition as a successful fundraiser.

At the end of the event, the KAS charity bazaar proved highly successful with over 1000 attendees, numerous contributions from sponsors, and held in the presence of H.E. Sheikha Awrad Jaber Al Ahmed Al Jaber Al Sabah. The event also gained momentum on blogs, and in local newspapers and magazines. The students of KAS raised for the Meso Foundation $19,826, truly an accomplishment from the heart. This event, KAS school administration and students alike, was a one-of-a-kind, the cause of furthering mesothelioma research and believing in a cure deeply touching all who took part.

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(Starting from the left) Living Values Booth: Shereen Kamal, Razan AlHuneidi, Ashraqat Sayed, Mariam, Shaaban, Omniya Sobl, Duaa Mansour (Living Values Booth) with Al-Sheikha Awrad AlSubah
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(Starting from the left) Ahmed Sedfi, Serein Maxx, Latifa Al-Baqshi, Sina Karimi, managing the Donations for Mesothelioma Booth
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Salwa, Abeer Al-Halabi, Al-Sheikha Awrad Al-Subah, Batool Arjomand,
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Fawaz AlShammari Presenting An Award Of Gratitude To Al-Sheikha Awrad Al-Subah

We at the Meso Foundation thank all those at KAS for their determination, vision, and planning of this incredible tribute to Wajeeha Al Habib, and we sincerely hope to hear more from them, and from other mesothelioma warriors around the world, of overcoming their own challenges and achieving accomplishments for raising awareness.