GRACE :: News/Info

GRACE Highlights from 2014: Please Help Us for 2015 and Beyond!

In person and on the GRACE website, we often hear people express their profound thanks for the free services and especially the thoughtful, timely information we provide when people need it most. And unlike many other sources of information, you know that there is a person behind that perspective, and on our better days we foster a sense of a community of people working toward a common goal. We strive to do that without peppering people with frequent requests for financial support.

As we come to the end of 2014, I’d like to highlight some of our achievements for this past year and request that you please consider contributing to GRACE. We have provided several new initiatives, and we need more support to ensure sustainable progress.

ROS1 patients at the Acquired Resistance Patient Forum, September 2014

ROS1 patients at the Acquired Resistance Patient Forum, September 2014

First, 2014 marked a big transition as we launched 3 separate live patient forums, in Santa Monica in February, then Boston in September, and most recently in Chicago in late October. These programs brought together over 200 people who expressed profound appreciation of the opportunity to connect with other patients facing similar circumstances, as well as with many of the experts on our faculty, which included both global leaders in the topic of the day as well as patient advocates.

For some, it was an opportunity to finally meet people with whom they have felt an online kinship for months or years. It was even an opportunity to convene probably the largest group of ROS1 rearrangement-positive patients in one place, ever. These programs were all captured on video to provide the insights from the day to a broad audience of people around the world who could benefit from these presentations.

We also offered a huge amount of new content throughout the year, all the way from our highlights of last year into new molecular targeted therapies and other new research presented at the “Targeted Therapies in Lung Cancer” conference in Southern California to commentary from our big annual ASCO meeting, and more. Altogether, we have added more than 120 videos this year.

Tannir vid freezeAt the same time, we still provide news content in text form, with about 50 written updates of news blogs that are easy to share. We’re also putting our more and more of our content on social media channels, including Twitter, Facebook, YouTube, and others.

We truly need support from our audience to ensure that we can continue to provide great content at no cost to the people who need it. We know that many people are very grateful for the support and insight we provide, but we need support from others to continue with a sustainable model for the future.

I don’t receive any pay for the work I do for GRACE, and I put my money where my mouth is by donating to GRACE. I hope that you also find GRACE worthy of your support and will provide a tax-deductible gift to GRACE as well. 

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Join GRACE at the Barb’s Beer Salute to Jack West Oct. 2

Barbara Murphy with beer

Barbara Murphy was a great runner, wife, mother and friend. She passed away last December from lung cancer that was initially diagnosed in 2007.

This past July, her family launched the Barb’s Beer Foundation. Working with brewmaster Chuck Hohing and the Northsound Brewery in Mt. Vernon, Washington, they developed a recipe for Barb’s Beer and began selling it at a single restaurant in Bellingham called La Fiamma. Proceeds from every sale benefit the Global Resource for Advancing Cancer Education (GRACE).

On Thursday, October 2nd, the Foundation will present GRACE Founder and Board Chair Dr. Jack West with the first money raised since that launch. They will also announce their plans for the expansion of beer sales to other venues in the Seattle area.

Barbs Beer logo

The Foundation and GRACE invite you to join the celebration as the Barb’s Beer Foundation salutes Dr. West and the work of GRACE (and also enjoy some great brew)!

When: Thursday, October 2, 6:30 – 8:30 pm

Where: La Fiamma, 200 E Chestnut St, Bellingham, WA 98225

Our thanks to Barbara’s family and the Barb’s Beer Foundation for their support of GRACE. If you live in the Seattle area, please support La Fiamma and other restaurants that will soon start selling Barb’s Beer.

Like Barb’s Beer on Facebook!

Wondering what the recent GRACE Website shaking and rumbling is all about?

GRACE Under ConstructionOkay, I was just kidding about the shaking and rumbling, but we have been making some significant changes to the GRACE website lately, thanks in part to your generous donations to our Website Rebuild fundraising campaign.
(Please keep ‘em comin’ – there’s a LOT left to do!)

Most of the changes have been “under the hood,” but some have been visible and are hopefully already improving your experience on the site, especially in terms of page loading times.

In order to keep you informed about these updates in a more timely fashion, we’ve created a GRACE Site Ongoing Improvements forum topic where I’ll be making periodic posts to share our progress. Registered members (free) can also discuss the changes there with the GRACE staff.

We’re always interested in your feedback and suggestions for the GRACE site and welcome your participation.

Thanks and Cheers!

 GRACE Webmaster & Podcast Engineer

Help GRACE Rebuild Its Website

Our website needs help, and we’re turning to you.

Cancer patients and caregivers come to to get information they can trust. The folks who log on are loyal and passionate – and for that we’re grateful.

Unfortunately, the structure of our website can barely sustain the volumes of information that we’ve posted to it throughout the years. We have podcasts, blog posts, videos, slidedocs, images, online forums and thousands and thousands of pages of data and research results – all free and all for the benefit of people living with cancer.

But on the back end, the staff is nervous. We know that the website could implode at anytime. The thought of it fills me with dread because I know how much people rely on and I cannot imagine not being there for them. 

We have the knowledge and the plans to make a better website that will be simpler to navigate and light years easier to search. Over the past few months, we have applied for grants to raise money to pay for a website rebuild and we’ve raised $10,000 – just over half of what we need. Now we’re turning to you, our loyal and passionate website visitors, to help us finally reach our goal. We’ve created a campaign on GoFundMe to raise $7,500. Won’t you help us get there?

Please give what you can and urge others – via Facebook, Twitter or that antiquated thing called “email” – to do the same. Our website welcomes 50,000 unique visitors each month. If even 10% of our monthly visitors donated a few dollars, we’d reach our goal quickly, enabling us to get to work sooner.

Thank you.

Life Begins Anew: A Relationship Born of GRACE

Lisa and I have been long time participants on GRACE – I discovered it in July, 2008 when my wife Liz was diagnosed with Stage IV lung cancer, became a member and began posting in May, 2009 and added moderator duties in January, 2010. Lisa joined in November, 2010 when her husband Mark was also diagnosed with Stage IV lung cancer. During their illnesses, we received a great deal of expert information and emotional support from the GRACE faculty and community. We would like to share our story with our GRACE family. 

Liz passed away on November 4, 2011 after battling lung cancer for three years and four months. That same evening, I posted a message to tell my friends here on GRACE the terrible news. You can find that message here. I received numerous condolences and messages of support, including one from Lisa, whose husband Mark was taken from her just two weeks later.  She shared her sad news here.

Jim & Liz

Jim & Liz

Lisa & Mark

Lisa & Mark

As those posts describe, Liz and I had enjoyed thirty years of marriage, having met in college at the age of nineteen. Together for twenty-eight years, Lisa had met Mark while also in her teens. When they passed, Liz was fifty-five years old, Mark just fifty.

Neither of us had any idea how we would face what would probably be many years without our loved ones, but we couldn’t envision ever falling in love again.

I returned to my work as a GRACE moderator, answering other members’ questions or directing them to relevant archived posts, while hiding my own grief deep inside. Lisa, on the other hand, continued to post about her struggles, seeking support from the GRACE community to find a way to deal with her own sadness.

One of her posts struck a chord with me, and I posted an uncharacteristically long response in which I shared my own feelings and my attempts to climb out of the dark hole into which I had fallen. Here is how that post concluded:

There are times when I foolishly think that I’m the only person in the world that this has ever happened to; that even though I know that plenty of people lose cherished spouses, partners, parents, siblings and friends to lung cancer, somehow my situation is different – no two people who loved each other as much as we did were ever torn apart so cruelly. But of course I don’t have to go far to see how ridiculous that thought is. All I have to do is read posts from the many GRACE members who are so utterly devoted to their loved ones, and who feel such pain at their suffering. All I have to do is read your posts when you describe your love for Mark, and his for you.

The value of that realization is that I then understand that there are people who felt just as deeply hurt as me, but who found their path to peace. I can’t rationalize away their success by telling myself that they weren’t suffering as badly as I am. It tells me that it can be done and that it has been done and it makes me determined to get to that better place. And I know that my wife was very concerned that I get to that place, so it’s not just my goal, it’s hers as well.

That is one of the reasons that I am here, and I think why you and many other GRACE members are here. We’re all on very similarly perilous voyages, learning what we can from each other about how best to navigate these very treacherous seas, not only from the medical point of view but the human as well.

I hope that very soon you can reach the comfort of calmer waters.

The full post can be seen here

Other members also posted replies, but soon the conversation was just the two of us. After a couple of days, I sent Lisa a private message offering her my phone number if she wanted to talk to someone walking the same path. 

Three days after my post Lisa called me, beginning a series of daily phone calls in which we shared everything we were feeling. Every night we would talk for hours, until the wee hours of the morning.

Despite the fact that the subject matter of our talks was tragic and we shared plenty of tears, I had never found it so easy to talk to anyone, and she felt the same about me.

With so much in common, there was an instant connection between us and within just a few days we were best friends, feeling as though we had known each other for many years. For each of us, the highlight of our day was the next phone call or email from our new friend. Within a week we had exchanged pictures and a little laughter had crept into our conversations.

 A week later I was to travel to North Carolina to spend the holidays with my sister and her family, so I bought my first cell phone so that I could continue to talk to Lisa while there. Not only did we talk and email, but now we began to text also (over 4000 the first month!)

 A few days after Christmas we began our nightly phone call, and at midnight I was the first to wish Lisa a happy birthday. After four more hours of conversation, running the gamut from tearful to joyful, I took a chance and told Lisa that I was falling in love with her. When she said she was feeling the same about me, it was as if the sun had burst through the clouds after many overcast days.

The truth was that we weren’t “falling in love”, we were already there. Somehow, there was a certainty about what was happening. In fact, we wrote the first draft of the post in which we shared our good news with our GRACE family the next day. Friends and family could see the difference in each of us, as though a veil of sadness had been lifted.

 Not that there weren’t doubts. They weren’t about each other or the way we felt, but thoughts about whether it was improper and too soon and how friends and family would react. I was sharing my doubts with my sister, while Lisa was talking to a close friend. Each of them tried to reassure us, but the doubts lingered for quite a while; they just couldn’t stop something that seemed so inevitable and so right.

 A week after our revelatory phone call, I drove from Chicago to Dayton, Ohio to meet Lisa for a few hours. Each of us knew that the love which we had found online and on the phone would be the same in person, and it was. 

With only a couple exceptions, every weekend I made the six hundred mile roundtrip drive to be with Lisa. At first I stayed in hotels, but by the beginning of February we had rented a small house. The plan was to spend weekends there, but in March Lisa and her teenage daughter moved in full time. (Lisa also has two adult children).

Lisa & Jim

Lisa & Jim

Completing a process which had begun the previous month, in early March we selected a setting and stones for a diamond ring for Lisa. A week later, we returned to pick it up. After bringing one of the jewelers to tears with our story, I dropped to a knee, pledged my never-ending love and slipped the ring onto Lisa’s right ring finger (we had agreed that her rings from Mark would remain on the left, as does my wedding ring from Liz). I didn’t need to ask her if she wanted to spend her life with me; somehow we both had known that from the beginning.

We’ve been together in Ohio full-time since June, 2012 and it’s been over two years since GRACE brought us together. Mark and Liz are always in our thoughts, and we often share both happy and tearful memories of them. We are grateful beyond words to Dr. West and the GRACE faculty and community for the help that we received during Mark’s and Liz’s illnesses, and for the wonderful new life that we have discovered.

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