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Posts Tagged ‘Mesothelioma’

Durham, NC 2014 Miles for Meso

Davis Duo

Davis Duo

Durham, NC – A couple of weeks ago I agreed (wholeheartedly) to help captain a virtual team for this year’s Miles 4 Meso race in Alton, IL.

TODAY I REGISTERED!! And I hope you will too.

To make it easier – and possibly more fun, especially for my local peeps – I’m offering to donate another $5 for anyone joining me Saturday September 27th at 8:30 am at Durham’s Northgate Park! For each person who makes the commitment to come out and run or walk with me in honor of Mesothelioma Awareness Day & the 6th Annual running of the Alton, IL Miles 4 Meso event, I’ll donate to the cause in your honor. *If you bring your dog, I’ll donate another $5!

Meso Awareness Day is actually September 26th. The day will most certainly be marked by Mesothelioma Awareness Research Foundation Warriors in Times Square, as my father joined in while he was alive. The weekend of MAD he would also try to run the Simmons Hanly Conroy race.

courtesy CureMeso.org

courtesy CureMeso.org

So in his honor I will try to run, or at least walk, a planned course in the Northgate neighborhood (300 West Club Blvd).

YOU can register for the ADAO Mesothelioma Warrior Virtual Team.

I signed up and created the group Durham Davis’s and added I was running in honor of Larry Davis!

** Also, if you join me, in addition to donating $5 to ADAO for you, I’ll provide Saturday morning snacks at my place!

Me & Mary from MARF in 2012

Me & Mary from MARF in 2012

Miles4Meso 2014 & ADAO

6 years ago the Simmons Law Firm in Alton, IL began a race called Miles 4 Meso. Since then numerous groups, companies and individuals have started their own M4M races or rides all across the country. My father organized his 1st the following year, in 2010. The proceeds all going to advancing the little knowledge the world has in regards to the devastating cancer, Mesothelioma, and trying to find a cure.

This year the original race, held the weekend of National Mesothelioma Awareness Day, has pledged their support to the Asbestos Disease Awareness Organization and President, Linda Reinstein.

I personally don’t think I have run a race since the M4M event a few months following my father’s death in 2012. It photocertainly brings up a number of feelings, many that are not worth mentioning here, but at least one of anger that the US has not yet banned the use of asbestos in many household and automotive products – or that they didn’t when politicians learned asbestos was killing people.

Reinstein recently held a campaign to bring more awareness to Congress #message2congress about the dangers of asbestos. That, in addition to traveling the world for asbestos related hearings and visiting the many victims and families of this horrible killer.

I look forward to helping her bring visibility to this year’s Miles 4 Meso, ADAO and the dangers of asbestos exposure.

Please join us! Either in person or as part of the ADAO Mesothelioma Warriors Virtual Team . XO~Courtney

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Changes to the Meso Foundation Symposium

SymposiumInsideBanner

I’m well behind the updates to this year’s Meso Foundation Symposium. I ran into a huge road block in my personal life trying to make sense of a Meso related death and all that has happened since and I have clearly not been strong enough to keep up like I did when I was up keeping this site for my father.

A lot has changed, even in the last year, and things are changing within the Foundation and with the Symposium. But rest assured the most important things will absolutely be the same.

There will be an incredible outpouring of support and caring. People like Mary Hesdorffer will be there with amazing insight and availability (don’t get me wrong, she’ll be super busy, but somehow she defies the space-time continuum with personal conversations and help). The Meso Foundation team will put on another outstanding conference and the attendees will all have experiences to share. If you haven’t made plans and can, definitely go. You will find a support group who will help you every step of the way. And as I read earlier, ‘give yourself permission’ to miss something or cry or express yourself. I didn’t and it only hurts me now.

A few things to note this year … there are 2 events happening. 1st the International Symposium on Malignant Mesothelioma and 2nd the Mesothelioma Scientific Seminar. You will be able to see much of the event via their LIVE STREAM . It has moved from Vegas last year back to the DC area. The host hotel is the Hilton Alexandria Mark Center. Also as you may have seen it is much earlier in the year from the 2012 Symposium.

For more info check out the Meso Foundation website http://www.curemeso.org  and Like their Facebook page & find communities.

Mavis’ Story: Making a Change

Yet another heartbreaking story of an inspirational woman:

Mavis addresses Parliment

Mavis addresses Parliament: courtesy MN fb

From KentOnline by Jamie Bullen:

Dying wife Mavis Nye battles for change in law to speed up treatment for mesothelioma after husband worked with asbestos in Chatham Dockyard

A dying woman battling for a change in the law to speed up life-saving treatment has revealed washing her husband’s work clothes led to her deadly disease.

When doctors told Seasalter pensioner Mavis Nye she was suffering from mesothelioma she knew straight away it was the result of cleaning her husband’s clothes after returning from work at Chatham Dockyard.

The asbestos-related cancer was caused by shaking the dust-filled garments before breathing in lethal fibres which can cause cancerous cells to develop.

Her husband, Ray, worked for five years as a shipwright at the dockyard during the 1960s before he left the industry.

In 2009 she was given three months to live but the 72-year-old is fighting on spurred by calls for a new law to speed up urgent medical treatments.

In the past five years she has had chemotherapy at hospitals in London and Canterbury to prevent the cancer from growing, but there are no new treatments available after she began suffering allergic reactions.

Speaking at her home in Seasalter Lane, Mavis said she knew instantly her exposure to asbestos through washing clothes was the reason she had cancer.

She said: “I knew straight away. We thought Ray would get it because he’s lost all his mates he used to work with but the shock was it was me instead.

< READ FULL ARTICLE HERE >

On Tuesday, she traveled to Parliament with Lord Saatchi to launch a consultation on his medical innovations bill, introduced after the death of his wife from ovarian cancer in 2011.

She said: “History was made this week. The debate was blown wide open.

“With mesothelioma, it’s not an old man’s disease any more.”

Another Connecticut Man Diagnosed with Meso

Many of my piers are helping to spread the word of a Connecticut man who has been diagnosed with Mesothelioma. 33 year old Christian Olsen, his wife & two young children have been given news any family should fear.

Recently News 12 Connecticut ran a story and you can hear the sweet young wife’s voice tremble has she speaks of the pain in learning what the family now faces.

In the video the reporter mentions the cause is not asbestos. I don’t believe they mention what they think it is. I watched it again, but still missed it if they did.

I don’t know the family, but being a daughter who lived with her father for many years in Connecticut, and to watch him suffer from this horrible disease before dying in the summer of 2012, it strikes a familiar chord. My heart goes out to him & his family .tiny red heartIf you would like to help him please donate to his GoFundMe account.

A Wonder(ful) Woman

Janelle Bedel

Janelle Bedel

Rushville, IN June 19, 2013 –

Last night I heard from a dear friend (and another father-lost-to-Meso amazing lady) that Janelle Bedel had lost her battle with Mesothelioma. (To read more about Janelle’s battle see Mesothelioma & Me)

It is an incredibly sad day.

I’ve had my own demons in the year since my father died. I’ve been wrestling with how he left his estate, the loose ends that were left untied by his death, and what it says about our relationship. Father’s Day came and went with a couple of friends who helped note the day with kind wishes, but no conversation with my dad … the only the reminder that it was the last day I saw him alive, one year ago.

The last few weeks have brought on the deaths of some other incredible Meso warriors and it all seems to much to bear. Today certainly marks the worst of it. It’s unbelievable to think another family is torn apart by a man made disease. A young, vibrant woman taken from her family way too soon.

jenellej2

Janelle’s Journey 2: In Memory of Larry Davis

Last October Janelle and her husband orchestrated the “Miles for Meso” bike run in honor of my father Larry Davis. The proceeds went to help the Meso Foundation’s immunotherapy research grant in his name. This gesture was indicative of this Wonder Woman. Janelle continued to fight to educate people about the deadly effects of asbestos, even from her hospital bed. When arrangements were made for hospice, the fight grew in her and she did more to inform people about this cancer than anyone I’ve ever seen. Rushville Indiana now has a day to celebrate Janelle’s life, the Bedel’s have a key to the city, and most of the greater IN and OH area must’ve seen the coverage of the Facebook movement adding the Wonder Woman symbol to everything in her honor. Hundreds of people have been introduced to Janelle, her kindness, her energy and her devotion to getting the word out about what politicians are doing to all of us by not eliminating all uses of asbestos.

Left to right: Linda, Janelle & Larry and the 3rd Annual South Florida Miles for Meso event.

Left to right: Linda, Janelle & Larry and the 3rd Annual South Florida Miles for Meso event.

I really don’t know Janelle all that well. She and my dad would talk and she always kept tabs on his progress. I feel like I know her because of all that she did in honor of my dad, but in all honesty we only had a couple of conversations. I watched her from afar as she was adored by others in the Meso community, loved by family in touching FB posts and awarded in all sorts of ways by ADAO, the Rushville Mayor, Senators and those of us who just had the simple opportunity to watch her brush into our lives like a super hero. I would’ve loved to have known her better. I think we all would be lucky to have this Wonder Woman in our lives a long while longer … if only. ❤

Wishing you love and peace on your next journey Janelle. Thank you for including me and my dad in the last one.

I’m not sure yet where to make donations officially, but you can always go to the Meso Foundation’s CureMeso.org site and give in Janelle Bedel’s name or on the Asbestos Disease Awareness Organization’s donation page.

Season of Giving

If you are looking to give to a charity close to your heart or close to the heart of someone you care for, I urge you to think of me, of my father and of the millions of others who have been or will be touched by Mesothelioma.

In the next month and a half I am hoping to raise the final portion of my father’s fundraising goal of $100,000. I know it seems daunting, but I am only $2856.64 shy of meeting that final number. I know it can be done.

With your help we can continue his legacy, his passion, to find a cure. It is needed now more than ever.

On November 13th, 2012 ADAO released a statement and video confirming that workers in Houston, TX were exposed to asbestos while repairing the city’s water mains. These workers were not warned of the potential hazards of their job on that day back in 2011.

If only you knew the pain of watching someone die of this horrible, preventible disease. For those who don’t know, I am so happy for you. For those who do, I know your pain. The deterioration of the person you love, the withering away of a once strong & amazing individual, the hopes and dreams of the things they’ll never see again … can break even the toughest of hearts.

For those of you still reading, I’m sure you remember the New York City sky the day of the attack on September 11th, 2001. You can see the planes in the rewind of your mind, the people and the papers flying down to the earth. Do you also remember that crazy, greyish cloud people closest to the attack walked through, breathed in, and tread on? Asbestos was in so much of those structures that came tumbling down,  more than 1,000 tons of it was released into the world that day. Can you even imagine how the city’s 1st responders are doing now? I’ll tell you that not everyone is doing all that well. CNN reported a Bill was created offering 1st Responders federal medical coverage for 58 different types of cancer. CNN also reported the story of how a 9/11 Detective Dies After Battle With Lung Cancer.

It is absolutely staggering to think of how people are effected by asbestos and that it is not fully banned. It was once the ‘miracle mineral‘, but it’s effects have been far less than miraculous!

Again, I hope you will join me in giving to my father’s last charity, the Mesothelioma Foundation. Through the funding of research, trials and education there may be a cure. As my father used to write, Believe in Yourself, Believe in a Cure.

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