More than 230 people gathered in Washington, D.C., last week to attend the 6th Annual International Symposium on Malignant Mesothelioma, presented by the Mesothelioma Applied Research Foundation. This was the largest attendance to date for the event, and 170 of that number also participated in Advocacy Day events, visiting their Congressional delegates on Capitol Hill.

This annual symposium is “for everybody” affected by mesothelioma. This includes patients, caregivers and family members, and those who have lost a loved one to mesothelioma, as well as advocates and scientific and medical experts. The event is designed to provide education about new research and treatment, to assist meso patients and their families and loved ones with coping skills and a network of support, and provide advocates with the tools to help make an impact in the effort to raise awareness about mesothelioma and the dangers of asbestos exposure, and to raise funds for research.

“I don’t think any community knows more about holding onto hope in the midst of difficult circumstances than mesothelioma patients and their families, ” said MARF executive director Chris Hahn. “But there is still a perception of mesothelioma as an orphan disease. It is overlooked, by the government, by the average person, despite the huge presence of asbestos in our society,” he said.

Mesothelioma is a deadly cancer that affects the lining of the chest wall or, more rarely, the abdomen, and, in very rare instances, the heart. It is caused by exposure to asbestos, and may have a latency period of up to 40 years or more from the time of exposure until symptoms manifest. It is difficult to diagnose, and often is misdiagnosed until too late for effective treatment. Even if diagnosed early, treatment is often difficult, and there is currently no known cure.

The Mesothelioma Applied Reserach Foundation is the largest independent program for mesothelioma reserach and support in the world. It operates a competitive grant program that awards up to 10 grants, or $10 million, each year to research projects most likely to lead to better treatment.

The Foundation is a non-profit organization whose main mission is dedicated to “eradicating the life-ending and vicious effects of mesothelioma.”

MARF needs funding. This is the only organization dedicated to the research and treatment of mesothelioma, but it is facing the same struggles that many other charitable foundations are facing in this tough economy - donations are down, funding is stretched thin. The foundation received 59 grant applications in 2008 - programs that WANT to explore and investigate mesothelioma in search of earlier diagnosis, better treatment methods and, ultimately a cure. But the Foundation was only able to fund five new programs in 2008.

It is estimated that 3,300 new cases of mesothelioma will be diagnosed each year.

Mesothelioma, once considered an industrial disease affecting primarily older men, is being diagnosed in younger and younger people. In 2008, a 3-year-old girl was diagnosed with mesothelioma. Mesothelioma is everybody’s problem. We cannot afford NOT to support mesothelioma research.

For more information about the Mesothelioma Applied Research Foundation and how to make a donation, visit them online.

The Foundation also needs volunteers. There are a number of ways you can help, from advocacy efforts to planning a fund-raising event, to simply helping put out the word about mesothelioma and the effects of asbestos exposure. You can find that information on their web site, too.

This was my first experience at the Symposium, and it was emotionally and intellectually exhausting, and inspiring, and motivating. I met some amazing people who, despite being personally devestated by mesothelioma, are determined to keep fighting. I’m amazed by this great group of folks.

I plan to add many more stories from information presented at the conference, and from the people I met there, in the next several days, so please check back! It’s too much to tell in one post!

Yesterday at the 2009 International Symposium on Malignant Mesothelioma, the theme was all about hope. The day focused on patients, caregivers, and those who had lost loved ones to mesothelioma. The symposium is presented annually by the Mesothelioma Applied Research Foundation, which is a national non-profit organization dedicated to ending the sufferng caused by mesothelioma by funding mesothelioma reserach, educating patients, and advocating for funding for mesothelioma reserach.

The highlight of the events yesterday happened early in the day, but its effect reverberated for the rest of the day and into the evening’s banquet. The Tribute of Hope Ceremony was held yesterday morning. Those who had lost someone they love to this horrible asbestos-related cancer brought a photograph of their loved one and added it to a photo collage. The names of all those who had lost their battle were listed on panels lining the walls - too many panels - and grieving folks filled the space around them, lighting candles in memory of someone dear who didn’t have to die.

Although the rest of the day was filled with informative seminars about reserach, treatment, nutrition, wellness and coping, the weight of that wall could not be forgotten. Candles glowed and you couldn’t help looking over, reading the list, hating mesothelioma and wondering just WHY nobody seems to know about this lurking killer.

This is why we need more awareness.

The day ended with a Gala Celebration of Hope. Awards were presented to those who have done outstanding work in the fight against mesothelioma. From MARF, here is a list of those honored this year:

• The Pioneer Award emphasizes the contributions of Dr. Robert Taub, MD PhD, whose treatment protocols and vision have shown remarkable results and have been the basis of hope for many mesothelioma patients.
• The Bruce Vento Hope Builder Award, named for the late Minnesota Congressman who died from mesothelioma in 2000, acknowledges the support and initiatives of Terry Lynch, International Vice President, Political & Legislative Director and Health Hazard Administrator of the International Association of Heat and Frost Insulators and Allied Workers.
• The Volunteer of the Year Award honors Craig and Shelly Kozicki for being an inspiration to the mesothelioma community through their continued dedication in raising research funds and providing support and hope to others faced with mesothelioma. Craig, who had been diagnosed with mesothelioma in 1998, died in May of this year.

At the close of the awards presentation, a microphone was passed around the room to allow mesothelioma patients in attendance to share their stories. There were stories of victory and remission, tears and fears, laughter, and anger. A cry began to ring out as each fighter took the microphone. Turning, they would point at the looming Tribute Wall and declare, “I am not going on that wall!!!”

Today was busy with meetings at Capitol Hill, asking legislators to support a total ban of asbestos in the United States, funding for mesothelioma research, and that they designate September 26 as Mesothelioma Awareness Day.

The day began with a briefing from Chris Hahn, the executive director of the Mesothelioma Applied Research Foundation (MARF), with latest numbers about federal funding for meso research (WAY below every other cancer) and information about goals for new legislation. A bill to ban asbestos and fund meso research has been before the Senate for the past SEVEN YEARS. In 2008, S774, more commonly known as the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act, passed the Senate, and in 2008 its companion, HR3339/6903, made it to committee in the House of Representatives, but never made it to the floor. It died in committee when the session ended and we now have to start all over.

Beginning at 11 a.m., I met with aides from Congressman Bobby Bright’s office, as well as the offices of Senators Richard Shelby and Jeff Sessions. I was disappointed that I was unable to meet with any of the legislators personally, but two of the aides were particularly enthusiastic about our efforts, and the third was amenable, so I have high hopes. Now I will simply begin to pester people until we finally see some legislation! I left copies of our petition in support of these efforts with each of the Congressional offices, so I hope they will listen to our voices!

Tomorrow the sixth annual International Symposium on Malignant Mesothelioma will address the latest topics in mesothelioma research and treatment. 170 people attended the Advocacy Day today, and 230 people will attend the conference tomorrow and Saturday, the largest number yet.

Chris Hahn told us, “The way that we’re going to cure this disease is through community. On Advocacy Day, each person’s voice makes a real difference, and each of you speak for hundreds who could not be here.”

I hope our legislature is listening.

I am in Washington, DC, to attend the 2009 International Symposium on Malignant Mesothelioma, which is being presented by the Mesothelioma Applied Research Foundation. This morning a group of us will go to Capitol Hill to talk to our legislators about a complete ban on asbestos in the U.S., and funding for mesothelioma reserach and treatment. Thank you to everyone who signed the petition to ban asbestos! If you have not yet signed, it’s not too late! Click on the link on the home page and add your name and, if you like, some thoughts on this issue.

More updates to come - the Symposium continues through Saturday afternoon.

As those of you who follow this blog probably already know, I’ll be traveling to Washington, D.C., next week to attend the 2009 International Symposium on Malignant Mesothelioma, which is being presented by the Mesothelioma Applied Research Foundation (MARF). On Friday morning, a regular part of the conference is a Tribute Ceremony to honor those who have lost their struggle against mesothelioma. This is a poignant time to recognize those who were so needlessly lost, and to provide a way to communicate the urgent need for funding for research and treatment.

During the Tribute Ceremony, MARF will create a collage of photos of these loved ones who have passed away. I would be more than honored to carry your photo to Washington to add to this Tribute. You may send your photo electronically, by email, and I will make color prints to add to the collage. Please let me know if you would be interested in this. You can email mymeso@gmail.com or email me directly at wendi.lewis@beasleyallen.com.

On Thursday, I also will have the opportunity to visit Capitol Hill to ask our congressional representatives to provide federal funding for mesothelioma research and treatment, and for the ban of asbestos. Please take a moment to sign the petition for these endeavors - there is a link on our home page.

I look forward to attending the Symposium next week, and will be blogging from the conference, which will provide a wealth of information about the latest progress in mesothelioma research and treatment. The conference begins on Thursday, June 25, with the visits to Capitol Hill, and continues through Saturday featuring distinguished physicians, researchers and advocates. I’m sure there will be a lot of valuable information to share.

God bless you all!

I’ve posted about several mesothelioma fund-raising and awareness events during the past month, happening in places like Texas, New York, Florida and Pennsylvania. Activities have ranged from bike rides to walks and even a bowl-a-thon. Proceeds from these events have gone toward mesothelioma research, through the Mesothelioma Applied Research Foundation (MARF), or will benefit an individual, like Shanna Kurtz, in her personal battle against mesothelioma.

Today I heard from two people who are looking for ways to help raise awareness of mesothelioma and funds for research. One lives in California and the other in New York. If you know of any events in these areas in the coming weeks, please email us at myMeso - you can just click that green “Contact Us!” button on the home page, or you can email me directly at wendi.lewis@beasleyallen.com.

Also, if you send us information about an event, please include information about where the proceeds will go (either to an individual or an organization) and let us know how people can donate even if they cannot attend the event. Many people in the meso community will still want to help, even if they aren’t able to travel to your area to participate.

I look forward to helping you get the word out about your mesothelioma awareness event!

If you live in the area of East Meadow, New York, on Long Island in Nassau County, there is still time to register for the Fourth Annual 5k Walk for Hope, which is set for this Sunday, April 19. The event will raise funds for the Mesothelioma Applied Research Foundation (MARF) and raise awareness of mesothelioma and the dangers of asbestos.

The 5k Walk for Hope was established in 2006 by Janice Malkotsis, who lost her father, Joseph Lombardo, to mesothelioma in 2005. Mr. Lombardo was diagnosed with peritoneal mesothelioma in 2004 and his family suffered with him as they watched him lose his fight to this deadly cancer, caused by exposure to asbestos.

Janice says she promised her father in his final weeks that she would work to educate people about mesothelioma, which is still largely unknown and unreported in the United States. Through MARF, Janice partnered with Erica Iacono, who also lost her father to mesothelioma, and the two created the 5k Walk for Hope. Together, they’ve raised nearly $50,000 for mesothelioma research through this event. They also are sponsored by Joe Fox of Belluck & Fox, LLP, who represented Mr. Lombardo before his death.

The 5k Walk for Hope will be held at Eisenhower Park in East Meadow, NY, with sign-in at 9 a.m. and the the walk beginning at 10 a.m. Registration is $15. Download the online registration form.

If you are unable to attend the walk, but would like to support this effort, you can send a donation that will go to MARF. The Mesothelioma Applied Research Foundation is the nonprofit collaboration of patients and families, physicians, advocates and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma.

You can send your donation to the following address:

5k Walk for Hope
c/o Janice Malkotsis
130 Taft Avenue
Merrick, NY 11566
(checks should be payable to 5k Walk for Hope)

An interview published Sunday, April 5, by the Boston Globe featured an interview with popular country music singer Billy Ray Cyrus, and his daughter Miley Cyrus, who is probably more famous now than her father was in his heyday. Billy Ray is known to a generation of 1980s country music fans for his hit single “Achy Breaky Heart” but is probably better known among a younger generation of teens and ‘tweens simply as the father of their idol, Disney superstar Miley Cyrus, of the network’s “Hannah Montana” series.

Discussing the atmosphere of celebrity in which Miley grew up, as the daughter of a performer, the interview veers off to mention Billy Ray’s roots as the son of a steelworker father, Ron Cyrus, who went on to serve 21 years in the Kentucky House of Representatives. Almost offhandedly, the story mentions that Ron Cyrus passed away of mesothelioma, which he almost certainly contracted through his exposure to asbestos in the mills.

Perhaps the paper felt this tidbit was relevant to its Boston audience because the elder Mr. Cyrus visited Boston for treatment of his mesothelioma, and son Billy Ray wrote a colorful country tune, “I Want My Mullet Back,” in honor of a former Red Sox baseball player. In his day, Billy Ray was famous for his own long mullet haircut, a style cropped short on top and sides but long in the back (“business in the front, party in the back”).

The mention of mesothelioma seems random, but there’s more to the story.

Ron Cyrus passed away on February 28, 2006. He had served in the Kentucky House of Representatives for Kentucky’s 98th Legislative District, beginning in 1975, and was elected to 11 consecutive terms before retiring in 1996. He was 70 years old when he passed away, and old reports from that time list his cause of death simply as “lung cancer.”

In March 2006, at the end of its regular session, both houses of the Kentucky State Legislature observed a moment of silence in honor of Ron Cyrus’s passing.

But now, in its 2009 session, the Kentucky legislature is once again recognizing the issue of mesothelioma and asbestos awareness, and, along with it, Ron Cyrus.

First, on Feb. 6, Representative Ancel Smith and Rep. Sannie Overly introduced HR95, a resolution to recognize September 26 as National Mesothelioma Awareness Day, as designated by the Mesothelioma Applied Research Foundation (MARF) and supported by U.S. Congressional resolution.

HR95 was established in Kentucky to honor “those who have fallen victim to this disease in the Commonwealth” and names “former legislator Ron Cyrus; Todd Hall, a bright, young University of Kentucky graduate who had started a successful business; [and] Allen Conley, a naval architect and marine engineer exposed to asbestos in the Yorktown, Virginia Naval shipbuilding yards…”

The resolution was adopted in the House by voice vote on Feb. 9.

Then, on Feb. 23, HB519 was introduced in the Kentucky House of Representatives, sponsored by Representatives Ancel Smith, Keith Hall,  Tom Burch, Leslie Combs, Ted Edmonds, Jeff Greer and Brent Housman. The Act would designate Sept. 26 of each year as Mesothelioma Awareness Day in the Commonwealth of Kentucky and would be known as “The Ron Cyrus and Todd Hall Mesothelioma Awareness Act of 2009.”

The bill passed the house by a vote of 97-0 on March 10, with 3 not voting.

The bill was introduced in the Senate designated as SB58, sponsored by Johnny Ray Turner, where it passed unanimously by a vote of 36-0 on March 3.

Read SB58.

Read HB519.

Read House Resolution 95.

Family and friends of Raymond Beltrami gathered at Ormond Lanes in Ormond Beach, Fla., on March 21 to participate in a Bowl-a-thon fund raiser to benefit mesothelioma research, and to raise awareness of this terrible cancer.

The event was organized by Tara Music, in honor of her father, Raymond Beltrami, who was diagnosed with mesothelioma in January 2008 and passed away just six short months later. She says, ‘Because I could not do anything to save him, I have felt the need to spread awareness about this horrific disease.”

For a $15 registration fee, participants received three games of bowling, lunch and a commemorative t-shirt. The event raised almost $1,000, and donations are still coming in!

You can help - mail your contribution to Tara’s attention at 11 Woodgate Court, Ormond Beach, FL, 32174. Proceeds will benefit the Mesothelioma Applied Research Foundation (MARF), which is dedicated to finding a cure for mesothelioma.

Pictured at top: Tara’s nephew, Dylan Hogan, holds a photo of Raymond Beltrami.

Pictured below, from left: Tara’s sister, Rene Hogan, mom Noreen Beltrami, Tara, and Raymond’s mother, Gladys Beltrami.

The Norm Kulig 2Young2Go Foundation will hold a 10k/5k run and 1 mile walk on Saturday, April 4, to raise awareness of mesothelioma and raise money for a cure. Proceeds from the race will go to the Mesothelioma Applied Research Foundation (MARF). The race and related activities will be held from 8 a.m.-1 p.m. at Wissahickon High School in Ambler, Pennsylvania.

Pre-registration online is $22, registration day of the race is $32. There also are sponsorship opportunities.

The Norm Kulig 2Young2Go Foundation is dedicated to increasing the awareness of environmental related causes of cancer, further the scientific research of such cancers and promoting the environmental cleanup of areas contaminated by cancer causing substances. The organization was founded by the siblings of Norm Kulig, who died at age 42 as a result of mesothelioma.

On its web site, the family states, “Our hope and goal is to increase awareness and provide much needed funds for a cancer that affects a large population but goes relatively unrecognized. The southeastern part of Pennsylvania was a hot bed of asbesots manufacturing for nearly 100 years. There are still significant waste deposits in the area that are in need of remediation. A strong potential currenly exists that these waste deposits may continue to infect and cause disease.”

If you cannot participate in the race, consider becoming a sponsor. You can sign up at the web site, or contact Bill Kasenchar at bill@2young2go.org or call 215-313-8698.