Mesothelioma Survivors Celebrate Life on National Cancer Survivors Day

Mesothelioma survivors are encouraged to join the nearly 14 million other Americans, and millions more around the world, who have survived cancer on Sunday, June 2, 2013, to observe the 26th annual National Cancer Survivors Day.

The day is a CELEBRATION for those who have survived, an INSPIRATION for those recently diagnosed, a gathering of SUPPORT for families, and an OUTREACH to the community, according to the National Cancer Survivors Day Foundation who sponsors the day. We encourage all mesothelioma survivors to take the time out to celebrate with your family and others.

“When most people hear the word ‘cancer,’ they automatically think the worst,” says Foundation spokesperson, Laura Shipp in a press release announcing the day. “But the truth is that more people are living longer and better quality lives after cancer than ever before. National Cancer Survivors Day is an opportunity for these cancer survivors to come together and celebrate this new reality in cancer survivorship. There is life after cancer. And that’s something to celebrate.”

The American Cancer Society reports the average survival time for people with mesothelioma, a rare cancer caused by past asbestos exposure, is between 4 and 18 months. However, between 5% and 10% of mesothelioma patients will live at least 5 years after diagnosis. The five-year survival rate for lung cancer is 16%, according to the National Lung Cancer Partnership.

The National Lung Cancer Partnership celebrated its ten-year anniversary last year, and to mark its next decade it announced its bold, new vision: double the overall five-year lung cancer survival rate, currently at 16%, to 32% in the United States by 2022.

We honor these special mesothelioma survivors who have battled the cancer and have been able to move on with their lives despite the challenges they face every day: Jan Egerton, a nearly 15-year survivor from England, Lou Williams, 10-year survivor of Australia, and Don Smitley, 18-month survivor from Pennsylvania. You can read more about these mesothelioma warriors through “Faces of Mesothelioma.”

Women cancer survivors are asked to attend the National Women Survivors Convention, which will take place this year in Nashville, TN, August 22 – 24. It’s a fabulous opportunity to learn, network and celebrate with other women survivors.

To find out more about National Cancer Survivors Day visit the Foundation’s website.

Part II: Chris Knighton Promised to Fight for Mesothelioma Victims

After she lost her husband to mesothelioma, Chris Knighton formed the Mick Knighton Mesothelioma Research Fund to help find a cure for the asbestos-caused disease. In Part II of this series, see how Chris’s efforts earned her a Royal award.

Support Groups and The Snowdrop Memorial

In addition to funding research, the MKMRF offers support groups for anyone who has been touched by mesothelioma. The Mesothelioma Self-help/Friendship Groups provide information and support to sufferers and their families. The groups meet once a month and welcome all whose lives have been affected by mesothelioma.

“We understand how important it is to meet others, and to share experiences, as well as having some fun along the way,” said Chris.

Another way to bring families together has been through the Snowdrop Fund. Chris created the fund to raise money, but also as a lasting tribute to loved ones. Families can set up Snowdrop Funds in memory of a loved one through the MKMRF website, and friends and families can make donations to MKMRF in memory of that person.

Often described as looking like three drops of milk hanging from a stem, snowdrop flowers, according to Chris, “work hard through the depth of winter; then come spring they bloom, bringing hope and promise for a better future.”

As part of the launch of the Snowdrop Memorial Fund, North Tyneside Council and Gateshead Council agreed to plant 5,000 snowdrops along the banks of the Tyne River in North East England, where thousands of people were previously exposed to asbestos.

Treasured Experience

Chris’s resolve to bring an end to deaths from mesothelioma earned her one of the highest honors for an English citizen – Member of the Order of the British Empire (MBE) Award. This is awarded for a significant achievement or outstanding service to the community. An MBE is also awarded for local ‘hands-on’ service which stands out as an example to other people.

“This is truly a treasured experienced,” said Chris upon receipt of the award by Her Majesty the Queen at Buckingham Palace last November.

Although humbled by the honor, Chris has no plans to give up on her quest to help find a cure for mesothelioma.

“For the first time ever, there is much to be positive about in terms of mesothelioma research; therefore MKMRF will continue to raise much needed funding in the hope of delivering real advances into treatment and understanding of the disease.”

Make a donation or find out more about Chris and the Mick Knighton Mesothelioma Research Fund.

See Part I of Chris Knighton’s fight for Mesothelioma Victims posted last week.

Part I: Chris Knighton, Founder of the Mick Knighton Mesothelioma Research Fund, Vows to Fight for All Mesothelioma Victims

Many people who lose a loved one to mesothelioma take the time to mourn, but then they get on with their lives. Not Chris Knighton. After her husband died from mesothelioma, Chris vowed that Mick’s death would not be in vain. Just one year later, Chris formed the Mick Knighton Mesothelioma Research Fund and has dedicated her life to helping fund research to find a cure for the deadly disease.

In 2000, Mick, a seemingly healthy, fit 59-year-old husband, father and grandfather, was enjoying spending time with his family and traveling Europe and the English countryside when he began having difficulty breathing. One month later, he was diagnosed with the asbestos-caused cancer and was told there were “no treatments, no cure, and no hope” for saving his life. He was given just six months to live, and in March 2001, Chris found herself a widow struggling to make sense of the cruel disease.

Fundraising for Mesothelioma

Driven by her heartbreak and her firsthand knowledge of what other families experience as they deal with a mesothelioma diagnosis, Chris joined in partnership with the British Lung Foundation to establish the Mick Knighton Mesothelioma Research Fund (MKMRF). Through her determination and hard work, Chris has raised over £1 million (.5 million) for mesothelioma research.

“Many of our donors have lost loved ones to mesothelioma, and only by working together can we help fund the kind of research that could deliver real advances in the treatment and understanding of the disease,” said Chris in an email interview with MesotheliomaHelp.

Chris is the only ‘full-time’ MKMRF staff member, although she does not draw a salary, and she is supported by volunteers as needed. As a result, “every single penny raised goes towards research and promoting a greater awareness of the disease,” said Chris.

However, getting people to donate to mesothelioma is not easy. Chris has found that the current economic climate, other competing causes and the publics’ general lack of knowledge about mesothelioma all work against MKMRF’s Fundraising Goals. Chris is constantly working to get the word out about the dangers of asbestos. She distributes MKMRF literature to doctors, clinics and hospitals across the UK, gives talks and presentations at conferences and seminars, and grants interviews to local, national and international press as a way to continually spread the word.

MKMRF Funds a Mesothelioma Tissue Bank

Chris is frustrated by the British government’s lack of action in funding mesothelioma research, even though the disease is diagnosed in nearly 2,000 Brits each year, and that number continues to grow. She sees the MKMRF as a way to fill the gap left by the government by raising funds critical to finding a cure for the currently incurable cancer.

One of the primary research projects funded by MKMRF is the Mick Knighton Mesothelioma Tissue Bank (MesobanK). MKMRF donated £300k to create the first formal central depository of mesothelioma tissue and blood in the UK. The goal, according to Chris, is to establish a tissue bank of mesothelioma tumours and blood that will be available to researchers “throughout the UK and beyond.” The tissue samples can be used by doctors and scientists as they research novel treatments to help the growing number of people diagnosed with mesothelioma each year.

Chris noted that all ethical approvals needed to collect and store tissue and blood specimens from mesothelioma patients have been finalized. Fresh tumour samples, blood samples and clinical data will be collected over the next three years. Once the set-up phase is complete, “the MesobanK will be open for business,” said Chris.

Professor Stephen Spiro, Vice Chair of the British Lung Foundation, is Chair of the MesobanK Steering Committee. Dr Robert Rintoul of Papworth Hospital is Chief Investigator, and Chris serves as a member of the MesobanK Steering Committee. She is also a layperson on the BLF’s Scientific Committee.

Chris believes international collaboration is critical if mesothelioma is to be conquered, and she is hopeful the MesobanK will have a huge impact on research into mesothelioma both nationally and internationally.

“Lessons learned about asbestos-related diseases, and in particular mesothelioma, will have a major impact on global health for decades to come,” said Chris.

Make a donation or find out more about Chris and the Mick Knighton Mesothelioma Research Fund.

Lung Cancer Awareness Month - Mesothelioma

Libby Mesothelioma Deaths Lead to National Asbestos Awareness Week

For the seventh year in a row, Senator Baucus of Montana proposed legislation designating the first week of April for special focus on the prevalence of asbestos-related disease. The U.S. Senate unanimously passed the resolution and has designated the week of April 1-7 as National Asbestos Awareness Week. Baucus represents the residents of Montana where nearly 300 people died in Libby from mesothelioma and other asbestos-related diseases.

Libby, Montana is the site of the W.R. Grace mine and mill that shut down in 1990 and is blamed for widespread contamination from asbestos exposure. Asbestos is a known carcinogen and is proven to cause lung cancer, asbestosis and mesothelioma, a serious cancer caused by breathing in the asbestos fibers that then become lodged in the thin membrane that lines and encases the lungs.

“We can never forget the suffering people in Libby have faced in the name of corporate greed. Asbestos Awareness Week is just one more way we can keep the folks in Lincoln County and people with asbestos-related disease everywhere in our thoughts and prayers,” said Baucus in a press release announcing the weeklong awareness resolution.

Senate resolution 66 urges the Surgeon General to warn and educate people about the public health issue of asbestos exposure, which may be hazardous to their health. The resolution cites the facts that asbestos is a known cause of occupational cancer; thousands of workers in the U.S. face significant asbestos exposure; and a significant percentage of all asbestos-related disease victims were exposed to asbestos on naval ships and in shipyards.

“We must do everything we can to help folks in Libby while preventing a similar tragedy in the future,” added Senator Tester, co-sponsor of the resolution. “Max and I will keep fighting for Libby and raising awareness of the dangers of asbestos to make Montana a safe, healthy place to live and work.”

Baucus was instrumental in urging the EPA to declare its first ever public health emergency in Libby, Montana. The declaration requires the federal government to offer screenings and health care for Libby residents as well as authorizing cleanup work in homes and other structures.

The resolution points out that asbestos-related diseases can take 10 to 50 years to present themselves, and the expected survival of people diagnosed with mesothelioma varies from 6 to 24 months. Most often diagnoses are not made until symptoms appear and the disease has progressed to an advanced stage leaving the patient with life-threatening complications. The resolution also notes that generally, little is known about late-stage treatment of asbestos-related diseases, and there is no cure for such diseases.

About 3,000 new cases of mesothelioma are diagnosed each year in the United States.

See the Asbestos Disease Awareness Organization’s website for daily informational postings about asbestos.

Mesothelioma Survivor Jan Egerton Pens Book to Raise Research Funds

Jan Egerton enjoys a visit to the store.

Mesothelioma can be an all-consuming disease. The physical and emotional toll of dealing with the symptoms, treatments and side-effects can leave those battling the cancer overwhelmed and exhausted. For many, plans are put on hold and “living for the day” becomes a mantra. Jan Egerton, a long-time mesothelioma survivor from England, lives for each day as well, but she can’t stop hoping for a future that holds a cure for mesothelioma. Jan hatched a plan last year on how she could help make that a reality, and this month she published her 402-page novel and is donating a portion of the proceeds to raise funds for mesothelioma research.

Although Jan loves writing and has always wanted to write a book, she had primarily used her blog, “Mesothelioma – Jan’s Journey,” to fill the void. However, after one particularly contentious day at work in early May, Jan came home, sat down at the computer and created “The DreamWeaver’s Choice.” Jan was so focused on the story that “the words just tumbled out, and my poor fingers couldn’t keep up,” she said. Three weeks later she had completed her first draft.

“Writing, regardless of whether it’s fiction or mesothelioma-related helps me deal with the cancer, instead of the mesothelioma eating away at me from the inside,” said Jan in an email interview last week. “Writing has given it a way to come out and keep me sane.”

Writing also gave Jan an opportunity to give back to the mesothelioma community. Jan contacted Chris Knighton, founder of the Mick Knighton Mesothelioma Research Fund (MKMRF), an English organization that was established to raise awareness and fund crucial research projects for mesothelioma, to let her know that she wanted proceeds from the sale of her book to help fund research through the Mick Knighton Mesothelioma Research Fund.

For Jan’s previous work with MKMRF and her continued generosity to help fund research efforts by the organization, Chris named Jan Ambassador for MKMRF.

“Jan is a source of inspiration and hope to so many people living with mesothelioma, and she has surpassed herself once again by writing a novel with the proceeds going towards the Mick Knighton Mesothelioma Research Fund,” Chris told MesotheliomaHelp.org in an email.

Chris explained that an MKMRF Ambassador acknowledges the work of the Research Fund wherever and whenever possible; helps to raise its profile, and encourages fundraising to help the organization continue its work in the fields of research, support and campaigning so fewer and fewer people have to go through the pain and suffering mesothelioma brings both sufferer and their family.

“What better person could we have as an ambassador than Jan, a true mesothelioma survivor, and indeed it is us at MKMRF who are humbled and honoured to have her on board,” said Chris on naming Jan ambassador.

“The DreamWeaver’s Choice” is a complex story of the battle of good versus evil where the central characters are vampires and spirits, and a human detective with her beloved K-9, Bear Boy. The story moves from the 1800’s, when vampires roamed the streets of England and viciously took victims, to modern day where vampires still live in England but have divided into factions of “good” vampires who live among humans without harming them, and “bad” vampires who continue to stalk and attack unsuspecting Brits.

The good vampires rely on a sophisticated set of medicines and supplies to help them function normally, but their enemies are working hard to hijack and sabotage their efforts while reaping billions of dollars by extorting the desperate vampires needing the potions to remain part of society. The players in the book have deeply intertwined lives and knowing who to trust becomes a matter of life and death.

“I only hope the book does the charity justice and raises some much needed funds,” says Jan.

Jan self-published the book and is trying to promote it via word of mouth and social media. You can find information about the book at Novelist Jan and on Facebook at Bearboy Vampire Books. The book is available for Kindle at Amazon.com. USA readers can order here, UK readers can access the book here. Jan is currently working on a print version of the book.

Sources:

Facebook at Bearboy Vampire Books
http://www.facebook.com/#!/pages/Bearboy-Vampire-Books/168388509977228
Novelist Jan
http://novelistjan.blogspot.co.uk/

Category: For Your Family