Donate to a Mesothelioma Support Organization

Consider Donating to a Mesothelioma Support Organization in 2014

At this time of year, many people start pulling out receipts to see what kind of tax breaks they can get from their charitable donations in the previous year. There are thousands of organizations competing for donations, and deciding where to allocate your dollars is a very personal decision. This year, MesotheliomaHelp asks that you consider making a donation to a charity that is dedicated to finding a cure for mesothelioma and for improving the lives of mesothelioma victims.

Each year, 3,000 Americans and 2,500 Brits are diagnosed with mesothelioma, a rare form of cancer caused by past asbestos exposure. The cancer is highly aggressive and is resistant to many cancer treatments, leading researchers throughout the world to spend countless hours searching for a new, effective treatment. There is no known cure for the disease.

Cancer research is expensive and time-consuming, and for research related to a rare disease, such as mesothelioma, the costs can be even higher. Researchers rely on funding from public and private sources to run their clinical trials and to ensure continuous funding throughout the projects.

Mesothelioma Organizations in the US and the UK

The benefits that these organizations provide to patients, families, and caregivers are boundless. If you are looking for a resource for information pertaining to mesothelioma, these organizations are established and many have been recognized for their support and dedication to the field of research and medicine.

Asbestos Disease Awareness Organization. ADAO was founded in 2004 to give asbestos victims and concerned citizens a united voice, to raise public awareness about the dangers of asbestos exposure and to work towards a global asbestos ban. ADAO is an independent global organization dedicated to preventing asbestos-related diseases through education, advocacy and community.
Mesothelioma Applied Research Foundation. The Meso Foundation is one of the leading foundations “dedicated to eradicating the life-ending and vicious effects of mesothelioma.” A donation to the Meso Foundation will help fund grants and critical research, advocate in Washington, D.C. for greater federal funding, and educate patients, families and doctors on current treatment options. You can support The Meso Foundation through a donation established by MesotheliomaHelp blogger Jennifer Gelsick, and her family, in memory of her father, Don Smitley.
CancerCare.org. CancerCare is the largest, long-standing national organization helping all people affected by any type and any stage of cancer. 87% of donations directly support its suite of services, which include telephone, online and in-person counseling and support groups, educational workshops and resources, as well as financial assistance. Donors can designate their gifts to support general operations or medication co-pay assistance. The 2013 Woodworkers Fighting Cancer build event donated over $12,000 to CancerCare.
Mesothelioma UK. Mesothelioma UK is a national resource centre located in England dedicated to providing specialist Mesothelioma information, support and improved care and treatment for residents of the United Kingdom. All services are free of charge; they rely totally on donations to the Mesothelioma UK Charitable Trust for financial support. Mavis Nye, a British mesothelioma survivor, donates proceeds of her book, Meso Warrior, to Mesothelioma UK to help raise funds for mesothelioma research.
Mick Knighton Mesothelioma Research Fund. MKMRF is an English organization founded by Chris Knighton after her husband, Mick, passed away from mesothelioma. The organization aims to raise awareness, fund crucial research projects, improve diagnosis, treatment and care for mesothelioma sufferers plus offer help in accessing information and support. Jan Egerton, a nearly 10-year mesothelioma survivor and an ambassador for MKMRF, donates proceeds of her novel, “The DreamWeaver’s Choice,” to MKMRF.
Cancer Fund of America can be traced back to March 23, 1984, making it the oldest national cancer organization having its primary mission of providing products to the cancer victim and their family with no emphasis placed on research.

Every dollar makes a difference for mesothelioma research. To help the fight against mesothelioma, please consider donating today!

Sources:

Asbestos Disease Awareness Organization
http://www.cvent.com/events/2012-annual-asbestos-awareness-conference/archived-e6277e3d443b4c059bed43fc0937b530.aspx
Mesothelioma Applied Research Foundation
http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8598593/k.D685/Homepage.htm
Mick Knighton Mesothelioma Research Fund
http://www.blf.org.uk/Page/MKMRF-Mick-Knighton-Mesothelioma-Research-Fund

Mesothelioma Warriors New Year Resolutions

Mesothelioma Warriors Offer New Year’s Resolutions

As another year kicks off, many of us take the time to reflect back on last year and vow to make the New Year better than last. People say things like, “This year I’m really going to lose weight,” or “I’m going to find that job that I’ve always wanted.” For patients and their families battling mesothelioma, however, just making it through another day, or month, is all they hope to accomplish.

MesotheliomaHelp.org reached out to several long-term mesothelioma survivors and asked them what their resolutions are for 2014. Jan Egerton, Lou Williams and Mavis Nye all initially responded saying, “I want to be here for another year.” All three of them underwent another cycle of chemotherapy and 2013, and faced more than their share of bad days. But, with 2014 here, they are positive and upbeat and offered up resolutions to encourage others to stay positive and to keep fighting.

Jan Egerton has offered glimpses into the daily struggles she has encountered over the last year as she continues to battle mesothelioma. Jan is entering her tenth year of diagnosis, and as she fights breathlessness and exhaustion she vows to keep fighting and to be around for her husband for many more years.

Jan’s hope for 2014 is:

To fight with everything I have to ensure that I will be celebrating New Year’s in 2014.
For everyone in the mesothelioma community, whether you are a patient or a caregiver, to keep a positive attitude and to remember that for every bad day there will be a good one.

Mavis Nye has been fighting mesothelioma for four and one half years. She said previously, “I love getting up each day because it is a new start, a fresh start and I will see another day.” She said although she used to start every year promising to lose weight, this year is different.

In the New Year, Mavis Nye will work to:

Raise even more awareness of mesothelioma, and to fight for more money for research.
Carry on helping mesothelioma warriors to travel the pathway of this disease, but to give them strength as I show them I have survived longer than my oncologist predicted.

Lou Williams faces 2014 with the same positive attitude that has helped keep her battling both pleural and peritoneal mesothelioma. While focusing on her own health is critical, Lou also believes raising awareness of the dangers of asbestos is just as important.

For 2014, Lou will raise a toast:

To me, all the other mesothelioma warriors around the world, and to those who we have lost along the way (including my dad) through this deadly asbestos cancer. I will continue to raise much needed asbestos awareness, advocacy, education and give support on a global scale. Asbestos is deadly, there is no safe asbestos!
To me and my beautiful husband Keith, and to all the other carers and past carers, partners and loved ones who have been/are there with us for the long haul of living with mesothelioma – a journey that is a tough one with lots of highs and lows.
To being here in 12 months time and to living well in the meantime – doing what we love – travelling, spending time with family and friends and fitting as much into our lives as we do now!

Happy New Year and best wishes for 2014 to everyone fighting mesothelioma!

Mavis Nye Finds Her Voice and Fights for the Mesothelioma Community

Last week we shared Mavis Nye’s story as she fights pleural mesothelioma. In that article we shared the humor and love of life that has kept Mavis going strong. However, she also has a fighting spirit and works tirelessly to spread the word of the dangers of asbestos. In Part II of Mavis’s story, we talk about her efforts to educate the public.

Mavis Nye said that sometimes it feels like she lives her life in three month blocks. That is the length of time between each of her CT scans where her oncologist can determine whether her treatment is effective. Prior scans showed she was keeping the cancer at bay. However, her last scan showed some regrowth of the tumors.

“I have had so many scans and tests that I know that mesothelioma is the only thing wrong with me,” Mavis told Mesothelioma Help in a recent e-mail interview. If not for the cancer, “I could have lived to 99 like my mother did. That makes me so sad.”

It is this sadness and frustration that leads Mavis to do all she can to let everyone know that asbestos is extremely dangerous and to fight to shield future generations from this “nasty cancer” — a cancer she developed by inhaling microscopic asbestos fibers that clung to her husband Ray’s clothes that he brought home from his work at the dockyard.

The Prolific Writer

Within months after Mavis’s diagnosis she began to connect with other patients who were also struggling to make sense of the disease. Through social media, Mavis found a support group of mesothelioma warriors who had been through treatments and had joined forces to educate the public about asbestos and this terrible cancer. Via Twitter, @GrandmaMavis slowly began to post articles about newly discovered asbestos hazards, safety violations and medical breakthroughs. On Facebook she “liked” articles sent by others, sent affirming thoughts to patients struggling through treatments and the side effects, and shared information about clinical trials and upcoming medical conferences.

During this time Mavis became more knowledgeable about the disease, and she became more frustrated. She was determined to capture her story, as it unfolded, and what she has learned along the way. She became a prolific writer and she and Ray have made virtually every step of her diagnosis and care available to the public.

Mavis and Ray both maintain a daily blog. They leave their readers both laughing and crying as they follow their ups and downs, struggles, and highlights of their days. Mavis’s trademark humor and Ray’s adventures as a caregiver, and sometime patient himself, present a clear picture of how mesothelioma affects more than just the patient.

The two also created and manage OneStop Mesothelioma, a website that contains information they have gathered about asbestos, mesothelioma, medical resources, and even heart health. (Ray suffered a heart attack this year, and he offers readers information about angioplasty and stents.)

http://onestopmesothelioma.co.uk/index.html

In 2010, Mavis published her book, “Meso Warrior” to share her story and to “give other mesothelioma sufferers the insight that it’s not all doom and gloom.” All proceeds of her book go to Mesothelioma UK to help raise funds for research.

http://www.mesothelioma.uk.com

My Name is Mavis and I Have Mesothelioma

The first time Mavis spoke publicly about her story and about the disease was at the 2010 Mesothelioma UK Conference in London. There, she was able to tell her story of her mesothelioma diagnosis and treatment.

“I was nervous in case I made a mistake,” said Mavis, “but I got through it and I was surprised by the clapping.”

Once Mavis got started there was no slowing her down. She has been interviewed by national magazines, including Yours, a UK women’s magazine, and by local newspapers, local radio and TV stations, national papers, and international organizations. She has spoken at many more conferences, and starred in a safety video by the British Lung Foundation. She has even taken her fight to the British Parliament.

Mavis has also been awarded for her efforts. Among her honors is the 2013 Asbestos Disease Awareness Organization’s Alan Reinstein Award for her commitment to education, advocacy, and support to countless patients and families.

IATP 2013 Meso Warrior Award

Her proudest moment was when she was awarded the 2013 Independent Asbestos Training Providers’ Meso Warrior award. Mavis spoke for just a few minutes when she accepted the award, but her heartfelt words about her journey earned her a standing ovation, and left the room in tears. It was having Ray, her son, Terry and his wife, Nicky, in the audience that moved Mavis the most.

Forwarding Treatment

Now, one of Mavis’s favorite and most rewarding advocacy efforts is that of a patient representative at the Cancer Network in East Kent. As a multi-year survivor, Mavis has been called on to discuss mesothelioma treatments available, or soon to be available to the community. Others in the group include doctors, nurses, and pharmaceutical representatives.

“I have to fight for mesothelioma to be heard, as they discuss other cancers,” said Mavis. “At the Lung Disease Orientated Group (Lung Dog) I have to keep asking about clinical trials as there are so many for lung cancer, but our cancer is not really lung cancer as such it is the cancer of the pleura that cover the lung.”

Mavis knows there is no cure for mesothelioma, and she believes there may never be, but through her effort to support and promote the implementation of improvements in cancer care at Kent, she hopes to make a difference for other patients.

“We all hope there will be a wonder drug come out and save us like a knight on a white stallion,” Mavis wrote in a recent blog entry.

Mavis Nye Fights Mesothelioma with Laughter and Love

Mavis Nye of England shares her inspiring story of her ups and downs while fighting pleural mesothelioma. Through an email interview with MesotheliomaHelp, Mavis discussed how she takes on her cancer the same way she lives her life – with humor and through support from her family.

They say “laughter is the best medicine,” and for 72-year-old Mavis Nye that may be just the case. Mavis, of Seasalter, England, has been battling pleural mesothelioma since 2009. Although she has had her share of bad days, Mavis laughs a lot, makes fun of herself and even jokes about dying. It is this lighthearted approach to the serious, terminal cancer that has kept Mavis and her husband, Ray, enjoying their golden years.

“I have found that I have laughed a lot,” said Mavis. She believes that not only does humor help her and Ray better cope with her disease, but, she said, “I think it makes it easier for people to talk to me and not shy away not knowing what to say.”

Don’t let her humor fool you though – Mavis is a very serious and tenacious fighter when it comes to keeping herself alive and happy. She and Ray just celebrated their 53rd wedding anniversary, and she plans to celebrate many more years with the man who stole her heart when she was just 16 years old. She also wants to be there for her sons, Tony and Terry, her daughters-in-law, and her three grandchildren, who have put their lives on hold and rallied around her throughout her mesothelioma ordeal.

When Mavis was first diagnosed with mesothelioma, after experiencing difficulty breathing and numbness in her arms, she was told that she had just three months to live. Now, four and one half years later, Mavis is happy to say she has been controlling her destiny as much as the medical team that has been treating her.

Preparing for the Battle

Like a fighter heading into the ring, Mavis began preparing for the fight of her life on June 4, 2009, the day she heard the devastating news. In her June 12, 2009 blog article Mavis noted that she was already planning her fight: “I have a real battle on my hands, but with all these lovely wishes, I will fight— I promise.”

“Don’t think I’m sitting about like an invalid,” Mavis wrote in her blog just days later. She “tidied the garden and laid a little patio in a quiet place so I can sit and read when I’m on chemo.” She cleared out the shed of “stupid things we collect,” and began packing for a weekend camping event. Then, she added, “I have gone on the dog walk this week, 2 miles every day, as exercise will build the lungs — so you see I’m ready for this fight.”

Mavis needed that fighting spirit for the long road ahead. She has endured surgery, radiation, chemotherapy, a clinical trial and countless procedures and tests. And she is still looking for that silver bullet that will rid her of the cancer that has invaded her body. Mavis just completed a fourth round of chemotherapy treatment. Her doctors weren’t sure whether to proceed, but knowing Mavis’s strength and will, this summer they went ahead with six sessions.

Home Away from Home

Since Mavis’s initial treatment, a talc pleurodesis surgery where a talcum “slurry” was inserted in the pleural layers to seal the space so no further fluid could accumulate around her lungs, she and Ray have continued to do what they enjoy most – joining friends at an RV rally or kicking back for a few days of camping. After her first procedure, when she was still weak, Mavis and Ray packed up their motor home, grabbed their loyal dog Louis, and headed out for some R & R.

Since then, the two have barely missed an invitation to meet up with their friends from their “motor homer’s club.” And that time together has only strengthened the couple’s already unshakeable bond.

“Ray and I enjoy doing so much together,” said Mavis. “We are laughing all the time and enjoy camping together in the motor home. That’s when we can really relax.”

When they aren’t in their RV, the two are busy planning their next trip. Whether it is another country in Europe, a party in the next town, or a day of shopping, Mavis and Ray are buoyed by their excursions. They see each day as an adventure, and it also happens to be the best way for Mavis to cope with her mesothelioma.

“There have been some very bad days when in chemo, and the sickness and pain has been intolerable, but on those days I just lay back and rest knowing that the chemo was working on my Mr. Nasty.”

When asked what it is that gets her out of bed every morning, Mavis said simply, “I love getting up each day because it is a new start, a fresh start and I will see another day. Laughter and great friends and the love of life are what keep me going.”

Below are Mavis’ and Ray’s websites:

OneStop Mesothelioma – Contains information and resources about mesothelioma and asbestos
http://onestopmesothelioma.co.uk/index.html
Living with Mesothelioma – Mavis’s Diary
Ray’s Blog
Meso Warrior – Mavis’s book available on Amazon.com
https://www.amazon.com/Meso-Warrior-Mavis-Nye-ebook/dp/B004EHZXL6

Come back next week for Part IIof Mavis’s story – her advocacy.

Americans Urged to Contact Congress to Forward Mesothelioma Research

President Obama kicked off 2013 by signing into law the Recalcitrant Cancer Research Act. The legislation establishes a research framework within the National Cancer Institute to guide research efforts for recalcitrant cancers, or those with high mortality rates. Now, it is time for the NCI to develop the frameworks, and the Mesothelioma Applied Research Foundation is asking Americans to rally around U.S. Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) in urging all members of Congress to push the NCI to include mesothelioma in the frameworks.

McCollum and Pingree sent a “Dear Colleague” letter to the members of the U.S. House of Representatives asking them to join them in urging Dr. Harold Varmus, Director of NCI, to guide research efforts for the rare, asbestos-caused mesothelioma.

A recalcitrant cancer is a cancer with a five-year relative survival rate below 50 percent and one that has not seen “substantial progress in the diagnosis or treatment.” Mesothelioma meets the act’s definition for both of these requirements: the cancer has just a five to ten percent five-year survival rate, and there is only one FDA-approved treatment for the cancer. There is no cure for mesothelioma.

“Congresswomen McCollum and Pingree are leading a very important effort for everyone affected by mesothelioma by encouraging the National Cancer Institute to create a scientific framework to progress mesothelioma research,” said Meso Foundation’s executive director and nurse practitioner, Mary Hesdorffer in a press release applauding the Congresswomen’s action.

The Mesothelioma Applied Research Foundation, a national organization dedicated to eradicating mesothelioma and the suffering it causes by funding the highest quality mesothelioma research, has long advocated the U.S. government for increased focus on mesothelioma research.

Take action by urging your Congress member to progress mesothelioma research. Visit the Mesothelioma Applied Research Foundation’s web site for more information.

Sources :

Mary Hesdorffer
http://blog.curemeso.org/meso-foundation-congratulates-representative-betty-mccollums-efforts-advance-mesothelioma-research
Recalcitrant Cancer Research Act
http://www.gop.gov/bill/h-r-733-recalcitrant-cancer-research-act-of-2012-as-amended

Author: Nancy Meredith