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Another Little Known Cancer Takes The Life of Sports Supercaster

“When you die, that does not mean that you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live. So live. Live. Fight like hell. And when you get too tired to fight, lay down and rest, and let somebody else fight for you.” ~Stuart Scott as he accepted the Jimmy V at the 2014 ESPY’s

It’s always tough to see a young person die. I thought my dad, at the age of 65, was young … I really think Janelle Bedel was WAY too young in her mid-30’s … and Stuart Scott, after one last holiday with his family, died at 49.

All of these people I mentioned died of a cancer, yet to have a cure.

I’m adding a brief post on Scott b/c he’s from North Carolina and went to UNC. I live in NC and work at the “other school”. He also spent a great deal  of time in Connecticut, where my dad and I are from. He was an intern at the news station I watch now and a broadcaster at the station I worked at years ago. That in combination with my father’s love of sports and my feeling he would’ve been moved by the death of Stuart Scott, I wanted to say a few words in regards to awareness.

So in that sentiment I offer a quick story from Time Inc’s Health segment: “He also had a very rare form of cancer that even experts don’t have pinned down. Fewer than 1,000 cases of appendix cancer occur in the United States each year. Cancers of the appendix account for less than 1% of all diagnosed cancers, according to a review published in International Scholarly Research Notices, so choosing the right course of treatment is difficult because doctors simply don’t have a lot of previous experience to draw on.” It’s very similar to Mesothelioma in that regard, and what the victims suffer not having anyone who can really help them, not yet anyway.

SS – your passion, knowledge and groundbreaking ideas will live on.

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10th Annual ADAO Conference

April 4 – 6 2014 near Washington D.C.

The place, the Crystal Gateway Marriott: 1700 Jefferson Davis Highway, Arlington, VA   703-920-3230

This year friends of my father will be honored. A young woman, Janelle Bedel, who he greatly admired and who lost her battle with Mesothelioma in 2013, will be recognized as this year’s Alan Reinstein Award recipient as will Lou Williams and Heath Von St. James.

For more info on how you can get involved go to the ADAO website.

Additionally Global Asbestos Awareness week begins April 1 and runs through Monday the 7th.

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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.

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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.

Larry Davis Memorial Grant

Hegmans, Joost - Larry Davis Memorial GrantMacrophage recruitment/polarization as a prognostic and therapeutic target

Hegmans, Joost – Larry Davis Memorial Grant
Macrophage recruitment/polarization as a prognostic and therapeutic target

This year’s Mesothelioma Symposium, held in Las Vegas, Nevada, brought together some of the country’s finest people. Victims of the terrible disease, both the patients and the caregivers, doctors, lawyers, staffers and friends.

I admit the lead-up to this conference brought up a lot of the pain that occurred during my father’s life and even more that came in his death. The

"Celebration of Life"

“Celebration of Life”

anxiety I felt course through me was overwhelming, but I was able to use it to fuel a fire I’d let go out during the last few months. That was the fight for justice over the people my dad left in charge to make sure his final wishes were carried out. Now I can’t say what will or won’t happen, because I don’t know. But I finally had the energy to remind a few people that I love my father with all my heart and that no matter what they try to take, I have won’t renounce that he was my dad.

This past Friday’s symposium dinner  was an amazing reminder that his energy not only flows through me but also through a foundation he worked ever so hard for. I introduced myself around to those who may or may not have remembered me saying, ‘I’m Courtney, Larry Davis’ daughter’. It was so good to see people around me who so loved and enjoyed my dad. The people who he had turned to for information initially and friendship later. Unfortunately I forgot in my moment of accepting  his award the Larry Davis Memorial Grant to sign off with what became is go to signature “Believe in a Cure, Believe in Yourself‘. I was able to get in a good deal of Thank You’s to Mary Hesdorffer for always being an amazing point person, to Erica Ruble who also lost her father to this horrible disease who has been fighting to make every day better, raise money and for being such a great friend, first to my dad, and then to me. I needed to have thanked the whole Foundation staff for what they do every day and their help in making my father’s award happen, to all the folks who donated to the annual fund, and to the people who donated in my dad’s name when he died. Fortunately I did remember, actually there was no way I would forget (!), to thank Janelle who fights the affects of Meso every day of her young life and yet looks like a beacon of happiness despite the pain, discomfort and the unknowing. Janelle raised a significant amount of money in my dad’s honor during a motorcycle ride this past fall. She is a beacon and her attitude is outstanding. I’m sure I don’t even know all of the other people who had ideas or funds that I may have overlooked,  but I do believe that one of the best assets of the Meso Foundation is it’s ability to keep bringing people into their community and working for a cure.

grouppic

… and thank you to Linda who traveled to the ends of the earth to be there for my father’s funeral.

Of course, I should also thank my aunt, uncle and boyfriend for being so supportive, even when I’m so stressed I can barely hold the tears in. It was a difficult weekend for all of us, but I believe the community made it easier.

My love to the Meso Foundation, my family and  to the loving memory of my dad, may he rest in piece.

A few other groups I’ve failed to name outright are the law firms that have helped by sponsoring my father’s 3 South Florida Miles for Meso events and helped him to pay for his medical costs by virtue of a settlement; Simmons Law, Sokolove Law, Weitz & Luxemburg, Early Ludwick Sweeney & Straus and Levy Phillips and Konigsberg.

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Preparing for Vegas – Preparing for the Death of a Loved One

Linda Reinstein ADAO & Larry Davis

Linda Reinstein ADAO & Larry Davis

As I struggled weighing through my options and my finances in regards to whether or not I could make the trip to Las Vegas for the 2013 Meso Foundation’s Annual gathering, I’m reminded of so many things that have happened during the months since my father’s death. I thought I’d take a moment to remember and to write so that those of you out there can also be prepared.

First I commend the Meso Foundation Board & Staff for all they do. I did not take advantage of the resources they provide nearly enough before or after my father died. These gatherings/conferences/symposiums are a great place to seek out information. My father seemed to do an excellent job meeting people and having discussions with everyone, from survivors & patients to doctors and Foundation members. The Foundation offers panels on treatments, and fundraising and getting politicians to respond and legislate. There are also support groups, help-lines and social media circles for nearly every turn along the terrible path of destruction Mesothelioma leaves behind. There are also bright spots along the way and many of them are linked to the helpful folks you will find at the Foundation.

Larry Davis and Erica Ruble, Foundation fundraising coordinator.

Larry Davis and Erica Ruble, Foundation fundraising coordinator.

So, in preparing for your trip to Vegas … check out the agenda. See what is good for you and make a plan. Next try to meet other attendees as well as the hosts and forge new relationships. I can tell you right now that 2 of the most supportive people in my father’s life, and in mine, were members of 2 different organizations. One who is the #1 fundraiser for the Meso Foundation and the other, the head of ADAO (Asbestos Disease Awareness Organization). Granted my father was such a huge personality that I got both of them by default and by proxy, but they were there for me in the flesh when the time came to bury my dad. Also, from what I understand on the agenda, there is a legal panel meeting Thursday night and on Friday, one of the strongest women I know, Janelle Bedel,  is teamed up with some other extraordinary folks in the ‘conversation with the community’ panel.

Remember that there will be others there for the first time and some repeat offenders, as my dad might say. Everyone struggles with this disease differently, but there is bound to be a person or two you can relate to.

Mary Hesdorffer, Foundation Executive Director

Mary Hesdorffer, Foundation Executive Director

These things and more over, these people, can help prepare you for later. This symposium can be the launching point for very sincere conversations about what will happen. There was no secret.  My father was going to die from Mesothelioma. We didn’t know a lot about it. There isn’t currently a cure. But together we walked through it and we learned a lot along the way. I had a few, what I call “extra” years with my dad. Not everyone gets as long as I did. The end was sad and scary and he was so strong … and it was a community that kept him going. His family, his runners, his business partners and his friends in the meso community who fought for new information, for a cure, for funding, for legislation, who fought for him and gave him direction during some very dark days.

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Bike Run in Honor of Larry

Bike Run “Miles for Meso”
When: October 13th, 2012
Registration from 10:30-12:00 at Sportsman Bar in Rushville IN Bikes will leave at 12:00
Riders 20.00, passengers 15.00
: Includes Janelle’s Journey #2 bracelet, a raffle ticket to win a Titan Bulldog chock, donated by Titan Lifts, and dinner at our last stop with music from a live band “Thorn4Memory “ , we will be having a 50/50 drawing at all stops

Ride will start at Sportsman Bar in Rushville, stop at First Place Sports Bar in Connersville, then to Metamora to Hearthstone Restaurant and end at the Bayshore Inn at Lake Santee.
All proceeds go to Mesothelioma Applied Research Foundation towards the “Larry Davis Immunotherapy Research Grant”
Shirts sponsored by Simmons Law Firm, Shirts will be 15.00 day of event
In memory of my friend and meso fighter Larry Davis who’s quote was “Believe in a cure, believe in yourself”
Mesothelioma is a rare and deadly cancer caused by asbestos exposure. I have been battling Mesothelioma for over 5 years. I want to thank everyone for their ongoing support! Janelle Bedel
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Stories of Tragedy & Triumph

March 15, 2010 Comments off

Almost a year after my father, Larry Davis, died, another inspiring force in the heartbreaking world of Mesothelioma died. Known as “Wonder Woman”, Janelle Bedel, left us in June of 2013. She will be missed.

This is her journey …

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One Florida family suffered the loss of a loving husband, father, grandfather and brother in August of 2008. Lance S Ruble was diagnosed with Pleural Mesothelioma and passed away 1 year and 1 week later.

Since the tragedy, the Ruble family has worked tirelessly raising money and awareness for Mesothelioma. This year their goal is to raise $100,000 to help benefit the Mesothelioma Applied Research Foundation. To help please visit http://www.curemeso.org/faf/donorReg/donorPledge.asp?ievent=280040&supid=211532808 .

http://www.mesotheliomamission.com/

http://www.curemeso.org

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