Rare Disease Day 2014: Join Together for Better Care

Rare Disease Day 2014 There are more than 6,800 rare diseases that affect an estimated 25-30 million Americans. Although these diseases don’t occur often, they can have serious repercussions for the people living with them. Some rare diseases are hereditary, and others are due to environmental factors.

Mesothelioma: A Rare and Incurable Cancer

Mesothelioma is one of the rare diseases that are related to environmental factors. The only known cause of this deadly disease is exposure to asbestos. There are 3,200 people diagnosed with this aggressive and incurable cancer each year in the United States. Many of those diagnosed are not even aware that they were exposed to asbestos at their jobs or in their day-to-day lives. Symptoms of mesothelioma can take decades to appear. So in many cases, by the time they are diagnosed, victims may not have long to live.

Rare Disease Day, February 28, 2014

Today is Rare Disease Day, a worldwide event that was started in 2008 by EURODIS, a non-governmental alliance of patient organizations and individuals who are active in the rare disease field. Over the last six years, this special day has inspired more than 1,000 events — all with the goal of raising the public and policy makers’ awareness of rare diseases.

According to EURODIS, the day has “notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.” This year’s theme, “Join Together for Better Care,” focuses on bringing everyone with, working in the field of, or creating policies for rare diseases out of isolation to work together in hope and solidarity.


How to Participate in Rare Disease Day

More than 80 countries are expected to participate in Rare Disease Day today. If you or a loved one is suffering from mesothelioma or another rare disease, here are 6 ways to participate in Rare Disease Day 2014:

  • Become a friend
  • Raise and join your hands
  • Tell your story
  • Download communications material
  • Join the conversation on social media
  • Organize an awareness-raising activity


  • http://www.rarediseases.org/rare-disease-information/rare-diseases
  • http://rarediseases.info.nih.gov/files/Rare_Diseases_FAQs.pdf
  • http://rarediseaseday.org

World Cancer Day 2014: Debunking the Myths about Mesothelioma


World Cancer Day, celebrated annually on February 4th, unites the world’s population in the fight against cancer. This year’s theme is “Debunking the Myths,” an important need for all types of cancer, including mesothelioma, a deadly cancer caused by exposure to asbestos.

There are about 3,000 new cases of mesothelioma each year in the United States. By increasing awareness of this deadly disease and debunking some myths about asbestos and mesothelioma, we can help fight cancer together.

5 Myths about Asbestos and Mesothelioma

  1. No One Uses Asbestos Anymore —It’s Banned
    Asbestos is not banned in the United States. There are strict regulations governing its use, but there are still more than 3,000 consumer products that contain asbestos today.
  2. Lawyers Exaggerate the Dangers of Asbestos
    There is no safe level of asbestos exposure. Mesothelioma can take decades to develop, but the direct connection between asbestos exposure and this deadly disease is well documented.
  3. Mesothelioma Is a Disease of the Elderly
    People under the age of 50 are rarely diagnosed with mesothelioma, but there are confirmed cases of 13-year-old young women with mesothelioma in the United States and abroad.
  4. All Mesothelioma Victims Worked Directly with Asbestos
    Not only are those who worked directly with asbestos-containing products at risk for developing mesothelioma; family members’ secondary exposure puts them at risk as well.
  5. Those Who Worked around Asbestos Knew the Risks
    Until the truth came out in the 1970s, manufacturers hid the dangers of asbestos-containing products from the public and even from those who worked with these products daily.

Read more about these myths and learn six more. You can also sign our online petition to help ban asbestos now.

Grandmother Seeks Answers after Developing Mesothelioma

Sandra Anne Peterson believed she was exposed to asbestos decades ago, during her brief career as a factory worker. Now the 57-year-old United Kingdom grandmother is seeking answers after being diagnosed with mesothelioma, the rare but aggressive cancer caused primarily caused by exposure to asbestos.

According to the U.K.-based Shields Gazette, Peterson believes that she was exposed to asbestos while working in two factories as a teenager in the 1970s. In one factory, she made paper cigarette filters. There was a coating used in the manufacturing process, which she called “slurry.” Peterson believes that this coating contained asbestos. “The job was really dirty, and my overalls, face and hands got covered in fine, black dust — it even got up my nose and in my hair,” remembered Peterson. “I believe it contained the asbestos fibers which have made me sick.”

Peterson also believes asbestos fibers were commonly used to insulate electrical components at another factory where she worked from 1975 to 1976. Unfortunately for Peterson and others who labored under similar conditions, there were few, if any protections, to shield them from the toxic asbestos dust. “I was completely unaware of how dangerous asbestos could be back then,” said Peterson. “It is absolutely heartbreaking to think my illness may have been caused by working at these factories when I was a teenager.”

Peterson has retained a law firm experienced in industrial diseases to help her investigate exactly how she was exposed to the asbestos. Together they are seeking her former colleagues — people who may be able to “shed light on how the factories used asbestos and the working conditions she endured, so that we can get her the justice she deserves,” as her attorney put it.

“Sandra and her family are still coming to terms with the sad news she will never recover from this terrible illness, caused by simply going to work at these factories some 40 years ago when she was a teenager,” said her attorney.

Were you exposed to asbestos at a job site and developed mesothelioma or any other asbestos-related condition? You may be entitled to financial compensation in the form of a mesothelioma settlement. To learn more about your legal options, please contact Sokolove Law for a free case evaluation today.

Caregiver Grandfather Wins Million-Dollar Mesothelioma Lawsuit

A special tribunal awarded an Australian grandfather $1.3 million (in U.S. currency) after mesothelioma left him unable to care for his wife and grandchildren.

Sixty-eight-old Mario Perez was left disabled after his mesothelioma cancer spread to his spine, says an article in Australia’s ABC News. Prior to his debilitating illness, Perez cared for his wife, who has a chronic cardiac condition. He also spent up to three days a week caring for his four grandchildren.

Malignant mesothelioma is a rare but aggressive cancer that occurs in the thin layer of tissue (mesothelium) that surrounds the lungs (and sometimes, the heart and abdomen). Mesothelioma is almost always caused by asbestos exposure.

According to his mesothelioma law firm, Perez encountered asbestos when he worked as a bus depot laborer from the 1970s until 1990. During this time, he came into contact with asbestos from gaskets in bus engines and pipes. (He also was exposed to asbestos when a roof was removed in 1987.)

His mesothelioma law firm had argued that the care he provided to his family should factor into the settlement total. The Australian Dust Diseases Tribunal, which oversaw the settlement, agreed, as ABC News reported.

“We live in a world where grandparents are often very involved in caring for grandchildren and we are very pleased this has been recognized in this judgment,” said a lawyer from Perez’s mesothelioma law firm. “Understandably, Mr. Perez will no longer be capable of providing these invaluable services to his family as his disease progresses and his condition deteriorates,” she said.

Those who work around automobiles and other vehicles tend to be at high risk of asbestos exposure, even in the United States. While guidelines limit the amounts of asbestos in newer vehicles, millions of cars still have asbestos-containing parts, including hood liners, gaskets, heat-seal material, valve rings, and packing, according to this article.

If you or a family member has suffered from the devastating effects of asbestos exposure, you have rights under the law. Monetary compensation in the form of a mesothelioma lawsuit can help pay medical bills and other expenses. Call Sokolove Law for your free, no-obligation case evaluation today.

New York Politician Undergoing Mesothelioma Treatment

A prominent New York state politician is fighting mesothelioma with an experimental new treatment trial, Long Island’s Newsday is reporting (subscription required).

William J. Lindsay, 67, is the presiding officer of Long Island’s Suffolk County Legislature. Prior to holding public office, Lindsay worked as a labor leader and construction electrician. It was while working in construction that Lindsay believes he was exposed to the asbestos that caused his illness.

The article notes that Lindsay will be starting treatments next week at the National Institutes for Health in Bethesda, Md. Treatment for this rare (but often aggressive) cancer will include one week of therapy followed by a three week break; then there will be another week of treatment, and three weeks off.

Lindsay’s physicians will determine how to proceed with his mesothelioma treatment after these two rounds of treatment, says the article. Despite his treatment, Lindsay plans to return to work on March 19 for a legislative meeting.

Lindsay has already undergone conventional mesothelioma treatments, including surgery to remove a lung early last year, and radiation. In August, his doctor pronounced him cancer-free, but told him in January that the mesothelioma had returned.

Even today electricians are at a high risk of exposure to asbestos-containing building materials, such as insulation and drywall. They encounter these when running wires through older buildings. Often, this material will need to be cut or drilled to run the wires, releasing microscopic asbestos into the air. Inhaling even a small amount of asbestos can lead to asbestos related diseases such as mesothelioma and lung cancer.

If you have been diagnosed with mesothelioma or another asbestos-caused disease from exposure to asbestos at a jobsite, you may be entitled to financial compensation. To learn more about your legal options, please Sokolove Law for a free case evaluation.

EPA Looking to Finalize Cleanup of Asbestos-Contaminated Town

A panel of independent scientists confirmed findings by the federal Environmental Protection Agency that show even “miniscule” amounts of asbestos cause lung problems.

According to this story in the Insurance Journal, the science panel’s confirmation paves the way for the eventual finalization and release of a risk study on asbestos cleanup in the troubled mining town of Libby, Mont. The final risk study is expected sometime in 2014, says the EPA.

Libby is near the site of the former W.R. Grace Zonolite (an insulation product) vermiculite mining operation, which closed down in 1990. After decades of production, it was found that vermiculite from the mine was heavily contaminated by tremolite, a toxic form of naturally occurring asbestos.

In its draft report of the risk study, the EPA found that going above “extremely low levels” of airborne asbestos — 0.00002 fibers of the mineral per cubic centimeter — raises the risk of lung-scarring. Scars in the lungs frequently cause potentially fatal diseases, such as malignant mesothelioma, a rare but deadly cancer. The science board said the EPA was correct in using lung-scarring to determine asbestos risk.

The risk study will help the EPA determine when cleanup work can end in Libby. Started in 1999, the Libby asbestos abatement has so far cost more than $447 million. So extensive was the asbestos contamination, the town has been under a first-of-its kind public health emergency declaration (issued by the EPA) since 2009.

This year alone, the EPA expects to clean up at least 80 and as many as 100 properties in Libby, with several hundred more to be addressed. And depending on the risk study’s findings, this number could grow significantly.

The legacy of asbestos contamination has been devastating to the small community. Hundreds of people in and around the town have died from asbestos-related diseases, and many more have become sickened. Sadly, many more deaths are expected for decades to come because of the latency period of asbestos-related diseases — sometimes as much as 40 years.

If you have been diagnosed with mesothelioma or any other asbestos-related condition, you may be entitled to financial compensation. To learn more about your legal options, please contact Sokolove Law today. Asbestos attorneys have helped thousands of victims.

Mother Sues for Schoolyard Asbestos Exposure

A 45-year-old United Kingdom mother is suing the building demolition company she claims exposed her to the asbestos that caused her terminal lung cancer.

Penny Garner, a mother of three, claims that she was exposed to asbestos while playing in her schoolyard as a child in the 1970s. At that time, a building that contained asbestos was demolished next door, as this story in the Manchester Evening News explains. Decades after the exposure, Garner developed chest pains that were initially misdiagnosed as the symptoms of a pulled muscle, then pneumonia.

But 18 months after the pain began, Garner was diagnosed with lung cancer. As she hadn’t worked around asbestos, her exposure to it was a mystery. After her lung cancer diagnosis, hospital staff told her about a group that might help her take legal action. With the help of questioning from her asbestos lawyer, Garner’s brother remembered the demolition of the building next to the schoolyard. Garner is now taking legal action against the local municipal government, and the company that she claims exposed her to the asbestos.

The company denies any wrongdoing.

According to Garner’s asbestos lawyer, cases of younger people with asbestos-related diseases who were not exposed to asbestos in the workplace are on the rise. “This case is unusual because Penny is so young and has not worked with asbestos, but we are seeing more cases like this over the last few years.”

Despite two years of treatment, Garner has been told that her asbestos lung cancer is incurable. She doesn’t know how long she has to live. “It is terrifying that I could catch a terminal disease from playing in the yard at school and now all my friends from that time are worried too,” says Garner. “My mother is terrified for my brother who is a couple of years older than me.”

If you have been diagnosed with asbestos lung cancer or mesothelioma you may be entitled to financial compensation, even if you do not know how you were exposed. An experienced asbestos lawyer can help investigate your exposure.

Virginia Court Nixes Multi-Million Dollar Asbestos Award

Virginia’s highest court reversed a $17.5 million asbestos verdict, ruling that a judge improperly blocked evidence that may have changed the outcome of the trial.

According to a story in the Daily Press, Rubert “Bert” Minton was awarded the money in 2011, following a three-week trial. A jury in the case found ExxonMobil responsible for exposing Minton to the deadly asbestos fibers that led to his mesothelioma cancer. Minton died of complications from mesothelioma in August 2012.

But this week, the Supreme Court of Virginia reversed the award in a 5-2 vote. The justices claimed the circuit judge presiding over Minton’s trial improperly excluded evidence. This evidence would have shown that Minton’s former employer, Newport News Shipbuilding, had extensive knowledge of the links between asbestos and cancer. As the Supreme Court’s ruling stated it, “the trial court erred in refusing to admit evidence of the shipyard’s knowledge of the dangers of asbestos exposure and its procedures regarding precautions to be taken around asbestos.”

From 1966 and 1977, Minton worked at Newport News Shipbuilding as a repair supervisor on commercial vessels. In his supervisor position, Minton labored on 17 Exxon commercial oil tankers (out of a total of 200 vessels repaired during that time). Because of provisions in the workman’s compensation law, Newport News Shipbuilding holds immunity from asbestos cases brought by former workers.

Nevertheless, ExxonMobil sought to introduce evidence that the shipyard had extensive knowledge of asbestos effects. This way, the jury might have assigned greater responsibility to the shipyard for Minton’s mesothelioma. The circuit judge presiding over the trial blocked the move, and the jury found in Minton’s favor.

Now, the Supreme Court has remanded the case back to Newport News for a possible second trial.

From about World War II until the late 1970s, shipyard workers such as Minton were exposed to high levels of asbestos. The substance frequently was used in ship boilers, turbines, pumps, gaskets, insulation, and other asbestos products.

Did you develop mesothelioma after working around asbestos? Call Sokolove Law today for a free legal consultation about a mesothelioma lawsuit.

Mesothelioma Drug ONCONASE Status to be Discussed by the FDA

ONCONASE, a drug to treat mesothelioma and other cancers, is scheduled at the end of January 2009 to be the subject of a pre-NDA (New Drug Application) meeting of the Food and Drug Administration (FDA). This is a critical step to be taken before the drug’s manufacturer, Alfacell, can complete its New Drug Application. The intention of the pre-NDA meeting will be for the FDA to give ideas to Alfacell to finish its application. Whether or not the drug will be approved cannot be contested until after the finalized NDA is submitted. During the Phase IIIb trials for ONCONASE, only those patients whose mesothelioma was not successfully treated by other chemotherapies saw a statistical improvement in their condition with ONCONASE.

The lack of an impact by Alfacell’s drug on patients who were treated by other chemotherapy drugs might lead the FDA to not approve ONCONASE. Alfacell is looking to ask the FDA to allow for it to finish its rolling NDA within 48 hours of the pre-NDA meeting. In doing so, the company could get pointers from the FDA to better tailor its application, which will improve the chances of the drug being approved. Shortly after the completion of the NDA, the FDA will view the results of the clinical trials of the drug. If ONCONASE is approved, it will open the way in the near future for offering this drug to unresectable malignant mesothelioma (UMM) patients who have failed to be treated with other chemotherapies. ONCONASE has already been given fast track status to lessen the amount of time required in the FDA approval process. It also is classified as an orphan drug in the United States and Europe. This status is given to drugs that treat patients with rare diseases that affect fewer than 200,000 people.

Human Faces of Mesothelioma

Many fail to remember that asbestos victims are more than just names. They are people who have families, friends, and associations. mesothelioma touches many lives, not just the patient’s. Asbestos-caused diseases do not discriminate. They occur worldwide in all classes of people, in all age groups. Sometimes one must stop and pay tribute to those victims who unwittingly find themselves in the fight for their life through no fault of their own. Below are some of their personal stories: In KETTERING, UK, the Rt Rev Ian Cundy, Bishop of Peterborough, has been battling mesothelioma for 11 months. Now, even though treatments have kept the original tumor in check, the disease has spread to other parts of his body, and Bishop Cundy will have to undergo another round of chemotherapy to treat it. The bishop began his first round of chemotherapy over the Christmas holidays in 2007. As the leader of the Anglican churches in Northhamptonshire, Rutland, and Peterborough, Bishop Cundy’s fight with cancer has been followed by the Evening Telegraph.

In January of 2008, the bishop released a recorded message to be played to congregants at his churches. In it he said, “I hope that this recorded message will reassure you that you are still in my thoughts and prayers even though I cannot be around in the diocese as much as I would like.” By April of 2008, the Evening Telegraph was reporting that Bishop Cundy was doing well and beginning to take on more of his duties again, but by October 2008, the bishop had received word that the cancer had spread and another course of exhaustive chemotherapy would be needed. Bishop Cundy remains in the thoughts and prayers of the congregates of all his churches as he continues his fight. In TACOMA, WA, USA, a respected former high school teacher and coach’s life was honored following his loss against a nine-month battle against mesothelioma.

Born on February 17, 1940, Bob Ray Stewart passed away on September 25, 2008. Affectionately known as “Coach Stew” to players, students, friends, and family, Bob leaves behind a grieving widow to whom he was married for 46 years, Diana “Folino” Stewart. In addition to being a devoted husband, Bob was a loving father and grandfather. Now his son, Michael Stewart, and grown daughter Teresa Houser, son-in-law John Houser, and three grandchildren Hailey Maher and Hanna and Grace Houser, will have no father or grandfather with whom to enjoy the holidays in 2008 and for years to come. While he served as a baseball and basketball coach and teacher at Federal Way High School from 1970 until 1998, “Coach Stew” earned the respect of his students and colleagues. Following his retirement in 1998, he still remained an active member of his community as a substitute teacher and coach for his eldest granddaughter’s softball team. This all fell to pieces after Coach Stew was diagnosed with mesothelioma in early 2008.

A funeral mass in memory Coach Stew was conducted on October 4, 2008, and the family has requested that donations to the Mesothelioma Applied Research Foundation, (PO Box 91840, Santa Barbara, CA 93190-1840; 805-563-8400) be made to honor Coach Stew’s life and to seek a cure to this deadly form of cancer which robbed one Tacoma family of a husband, father, grandfather, and coach. If a cure can be found others will not have to die too soon of a disease that was not their fault. In WISBECH, UK, Valerie Taylor is now without her husband, Frank Taylor (67) due to his untimely death from mesothelioma on August 22, 2008. He was diagnosed with the disease in April of the same year, and his widow believes that his job as a demolition worker without protective clothing led to his cancer. At an inquest with the coroner, Valerie held that the dangers of asbestos were not known at the time her husband was working around them, but he came in contact with the toxic substance regularly during demolitions and cleanups.