Our friends at the Asbestos Disease Awareness Organization continue to work hard on behalf of victims of asbestos-related diseases. Linda Reinstein, Executive Director, will address OSHA tomorrow morning at 9 a.m. EST about the need to support a comprehensive ban on asbestos. We hope you're able to watch.

 From the ADAO Web site:

On behalf of the thousands of victims and families affected by asbestos, Linda Reinstein, ADAO Co-Founder will present on Thursday, March 4th at 9:00 am (Eastern) at “OSHA Listens” about the urgency and importance of a complete ban of asbestos at this is truly a unique opportunity. Since we cannot all be in DC, I hope you’ll take advantage of the live webcast that OSHA will broadcast. It will be streamed live all day on March 4th: http://www.osha.gov/as/opa/osha-listens.html.

 

It’s seldom discussed, but one chief factor in asbestos exposure and the development of mesothelioma is military service. Until its ban in the 1970s, asbestos was used throughout the military installations and ships. In fact, one-third of those who die from the deadly cancer mesothelioma were exposed to asbestos on the ships and in the shipyards of the U.S. Navy.

Thankfully, the Department of Defense (DoD) has committed itself to doing something about this crisis. In 2008, awarded its first-ever grant for research on mesothelioma, a $2.4 million award to Courtney Broaddus, M.D., for her work on macrophage-induced inflammation in mesothelioma. The grant was awarded as the result of a directive by the Senate Defense Appropriations Subcommittee to fund research in mesothelioma.

Since that first award, the DoD has stepped up its efforts. In 2009, the Department awarded several million dollars in funding to three important research projects that focus on investigating the early detection of mesothelioma, identifying new therapeutic targets, and implementing a clinical trial on new therapy.

This new funding commitment is admirable, but it only begins to redress the neglect of mesothelioma research by the U.S. government. The funding for research on mesothelioma lags far behind that of other cancers. In fact, from 2004 to 2007, the National Cancer Institute (NCI) invested less than $6 million on mesothelioma research—only one-tenth of 1 percent of its annual budget.

We hope that these new funding initiatives from the DoD signal an era of increased participation in mesothelioma funding and research by the U.S. government. Considering the sacrifice our veterans make, we owe it to them to fight for a cure for this deadly disease. 

In 2010 we are doubling our efforts to push legislation forward that would ban asbestos in the United States once and for all. Our first formal effort of the year began earlier this month when we reached out to the White House, Senate and House in snowy Washington D.C.

Despite historic snowstorms that literally shut down D.C. in early February, we were able to make contact with key policy makers through a series of conference calls. Our discussions focused on legislation that would ban asbestos and the introduction of our annual asbestos awareness week resolution in both the House and the Senate.

To the thousands of families affected by mesothelioma and asbestos exposure, I want you to know that Congress has heard your voice and read your letters – thanks to the advocacy and efforts of thousands!

In educational discussions, ADAO continues to highlight the irrefutable facts that the WHO, EPA and U.S. Surgeon General confirm, “Asbestos is a carcinogen and there is no safe levels of exposure.”  We must prevent exposure and fund research to eliminate diseases.

On behalf of ADAO and you, we owe Senator Baucus and Representative Cohen our gratitude for carrying the “Asbestos Awareness Week” Resolution designating April 1 – 7 a week of awareness.

Many thanks to those who make our work possible including our network of experts, community, and sponsors; thanks also to Jordan Zevon, ADAO National Spokesperson, for joining us on this special trip to The Hill.

In unity,
Linda Reinstein

Next spring our friends at the Asbestos Disease Awareness Organization will host their sixth annual conference in Chicago. I spoke with Linda Reinstein, Executive Director for ADAO, and she told me this year's program promises to be the strongest conference to date. The speaker list will feature renowned asbestos and mesothelioma experts such as Dr. Hedy Kindler. No doubt members of the Simmons firm will be in attendance to show support. Details on how you can register are included below. 

Register for the 6th Annual Asbestos Awareness Day Conference

April 9 - 11, 2010

Marriott Renaissance Hotel, Chicago, Illinois

Global Mission: Prevent, Detect and Treat Asbestos-Related Diseases

"Science and Technology Proves Asbestos is a Carcinogen"

This conference is made possible with the support and collaborative efforts of the Barbara Ann Karmanos Cancer Institute and the International Ban Asbestos Secretariat (IBAS).

Registration Fee:   

Professionals: $300

Students/Patients/Caregivers: $150

Sunday Remembrance Brunch: $25 with conference registration/$50 without conference registration

Agenda Session Topics Include

• Preventing Asbestos Exposure
• Detecting and Treating Asbestos-Related Diseases
• Asbestos Victim and Family Resources and Support
• Global Advocacy

Conference Speakers

Brad Black, MD

Barry Castleman, ScD

Jeff Camplin, CSP, CPEA

Sean Fitzgerald, PG

Arthur Frank, MD, PhD

Patrick Gerkin, PhD

Fernanda Giannasi, ABREA

Michael Harbut, MD, MPH, FCCP

Tanis Hernandez, LCSW

Laurie Kazan-Allen, IBAS

Hedy Lee Kindler, MD

Richard Lemen, PhD, MSPH

Terry Lynch, Int'l Vice President, Insulators Union

Pat Martin, Canadian Parliament Member

Linda Reinstein, ADAO

Kimberly Rowse, RN

Jordan Summers, Musician

James Webber, PhD

Jordan Zevon, ADAO National Spokesperson and Musician 

ADAO Asbestos Awareness Day Honorees

U.S. Senator Richard Durbin will be presented with the Tribute of Hope Award for his steadfast commitment and determination to ban asbestos.

The Center for Asbestos Related Disease Center (CARD) will receive the Tribute of Unity Award for their work to unite, educate and empower asbestos victims and medical community.

Dr. Hedy Kindler will be recognized with Dr. Irving Selikoff Lifetime Acheivement Award in honor of Dr. Selikoff's dedicated research into the social and medical impact asbestos has had on humankind.

Fernanda Giannasai will be presented with teh Tribute of Inspiration Award for being a bridge of hope and strength to victims of asbestos exposure in India and worldwide.

Warren Zevon "Keep me in Your Heart" Memorial Award - TBA

June Breit, honored posthumously, The Alan Reinstein Memorial Award for her commitment to advocacy to eradicate mesothelioma and offer support to patients and their families. 

Conference Schedule

Friday, April 9th

NEW! Private Gathering for Family, Patients, & Caregivers Only

5-6 p.m.

Meet and Greet  with Jordan Zevon

7-9pm

Saturday, April 10th

Conference

8 a.m.-5:30 p.m.

Sunday, April 11th

Remembrance Brunch

9:30-11:30am

On Sunday ADAO will light five candles at 10:30 a.m. CST for victims throughout and around the world.

In my role as VP of Medical and Patient Relations, I’ve had the opportunity to learn firsthand about the experiences of patients battling mesothelioma and the family members, friends, and medical professionals who support them. The past few months have been particularly eye-opening for me. Traveling all over the country to visit the nation’s leading mesothelioma treatment specialists and researchers, I’ve learned about promising new efforts currently in development. In the coming months, I look forward to sharing the latest news about these efforts.

I’ve also had a chance to witness the impact this disease has on the lives of patients and their families. They’ve told me about their struggles to maintain a sense of hope while undergoing painful treatments and struggling with all the complicated logistics of living with a serious illness. They’ve also told me how the holidays can be particularly difficult as families face what could be the last holiday together.

So as the holidays approach, I wanted to turn my attention to this very personal issue. To help me examine what patients and their families face at the holidays, I spoke with fellow nurse Amy Fair. Amy leads Simmons’ medical department, and works closely with patients and families throughout the country. She and I discussed what those facing mesothelioma can do during this time of year to reduce stress and find ways to celebrate that draw on the sense of hope and meaning that are so much a part of the holiday season.

"The main thing is to keep things as normal as possible," Amy told me. "While you can’t ignore the illness, try to keep your celebration from being just about the person who is sick. Pick some favorite traditions and stick to them, and share some memories that involve all family members, not just the person who is ill."

That said, families do have to make adjustments in their celebrations. The goal should be to focus on the things about the holiday that are the most important. You won’t be able do everything. Accept help where you can get it, and focus in on the things that really matter.

You may find that what you enjoy most are very simple activities that allow you to spend time together without requiring elaborate preparations. Set aside time to go through photo albums, watch family videos, or share your favorite memories.

Amy says patients she has worked with have kept a journal to write about their experience of the holiday. It’s hard to ignore the fact that it could be the last holiday together, so commemorating it in this way helps to create a sense of continuity.

Don’t feel obliged to attend parties or accept all visits. Schedule holiday visits around the patient’s rest periods to avoid fatigue. If you’re a caregiver, remember that you can’t care for your loved one if you don’t care for yourself as well. If you can, ask for assistance from your family or your church. Getting away to do some shopping or simply to recharge your batteries can be incredibly helpful.

Be sure to consult with your doctor about what to serve for your holiday dinner. This doesn’t need to mean completely revamping your menu. Small changes can make a big difference for patients who are taking medications that may interfere with digestion.

Remember that pharmacies may have limited hours during the holidays. Make sure you have access to the supplies you need, including refills of pain medications and full oxygen tanks.

Also, patients should plan to take pain medication 30 minutes before receiving company or traveling. The medication needs time to work, and it’s more effective to stop pain before it starts than to try to calm it once it hits.

A few precautions can help take the stress out of travel and ensure that you have everything you need when you land. At the top of your list should be how you plan to pack your pain medication. Take your medication in your carry-on bag rather than packing it in checked bags to avoid the risk of medication becoming damaged by exposure to extreme heat or cold or being lost in transit.

When traveling, always keep your medication in its original bottle marked with the patient’s name. Unidentified medications may be confiscated by airport security. If you have liquid medications that exceed current restrictions for carry-on luggage, contact the airport in advance to learn what arrangements you can make.

If you’ve recently lost a loved one, facing the holidays can be particularly challenging. Often, it can be very comforting to share your memories of your loved one during this season. Amy suggests creating paper ornaments and writing your favorite memories on them. To commemorate your loved one, you can read each memory aloud as you decorate your Christmas tree. Or you may choose to view videos of your last holiday with your loved one as a way to celebrate their memory.

Bear in mind that whether you’re grieving a loss or fighting disease, you’re bound to feel some sadness during the holidays. Honor those feelings, and focus on the comfort you feel surrounded by your community of friends and family.

We lost one hell of a fighter and good man this week. Ernest Conry, a husband, father and friend to many, lost his battle with mesothelioma on September 18, 2009. He passed away at his home in St. Louis, Missouri.

Ernie lived with pleural mesothelioma for over 7 years. His resilience against the disease is truly a testament to the power of a positive attitude. He was always quick with a joke and happy to spread the cheer. For years he attended the Mesothelioma Applied Research Foundation's annual symposium, where he took it as his mission to bring a bit of laughter to the many families and patients in pain.

Ernie once said, "The thing to do is get up and do something. Don’t let the cancer bog you down. Wait until someday it might bog you down, but my God, if you are still moving, keep moving. Go on about like you don’t have a disease. So the thing to do is get up and do something. Keep moving and enjoy it. You know, take the life that you have going for yourself and make use of it."

Born in 1933 in Tennessee, Ernie moved to St. Louis as a child. He entered the automotive field at age 17, becoming an apprentice auto mechanic at a Ford dealership. He was drafted into the army in 1953, and arrived in Inchon, Korea, six months after the armistice had been signed. From 1950 to 1998, when he retired on a union pension, Ernie worked consistently as a mechanic at a series of Ford dealerships.

Once diagnosed with mesothelioma, he took it upon himself to visit St. Louis area union halls and mechanic shops, distributing literature about the dangers of asbestos. He gave numerous seminars to our staff here at the firm. He taught us a lot - not just about asbestos in the auto industry, but about strength, character and resilience.

Ernie gave freely of himself, and all he ever expected in return was the pleasure of good company. He was a wonderful man. And he will be dearly missed.