Daily Recap

Thursday, July 24th

The excitement was palpable as delegates made their way to Columbus and campus of THE Ohio State University.  With a layover in Chicago, I had the chance to meet several delegates from various parts of the country.  I had the chance to talk with Beth from Mississippi who's a survivor; Joan, who walked this journey with a parent; Cindy, who is fighting for her life.

Once on the ground in Columbus, the dominant color was, of course, yellow.  Pretty much a sea of it as passengers arrived.  After checking in, the Summit began with an opening reception.  During the course of that event, I was privileged to meet Matthew Zachery, Founder of I2Y!, imtooyoungforthis.org, and some of the representatives.  Matthew's organization works specifically with Gen Xers (Young Adults under 40) as they wage war against this disease.  I also got to meet with Jonny Imerman and Rynell Cook from ImermanAngels.org.  Imerman Angels works to pair newly diagnosed individuals with others on like journeys!
It was so inspiring to hear survivors, both patients and caregivers, share how they were enjoying life and LIVING Strong!

Following the reception,we made our way to the Mershon Auditorium for the Presidential Town Hall meeting with Senator John McCain.  You can read the archive comments by following CAROLYNSHOPE (no space) on Twitter.com.
Lance made certain to question Senator McCain on his plan to reform our Health Care System and to reverse the downward spiral of funding for organizations like the National Cancer Institute.  Paula Zahn moderated the event and held firm the line of questioning, often revisiting questions whose answers did not necessarily meet expectations.



So far, the Summit has been even more than new delegates could imagine.  The LAF is committed to helping small, grassroots organizations develop their plans and make a difference, both on the local level AND across the country!



More to come......

Friday, July 25th

Friday morning started with a Keynote address from the 17th Surgeon General of the US, Dr. Richard Carmona.  Dr. Carmona first shared an experience of riding 20 miles into Washington D.C. with Lance.  He shared how Lance would be riding along, having multiple, concurrent conversations, with the greatest ease.  Dr. Carmona, however, found that his answers to Lance's questions were always limited to one or two words "jammed" between breaths and rounds of extreme pedaling.
Dr. Carmona shared the National Call to Action on Survivorship (NCAS), expressing the great need for patients to have the means and resources to navigate the health system, getting early, appropriate, and aggressive treatment EARLY in order to secure good outcomes.  He called our current health system "Sick" and noted how it had become perverted in its purpose.  The current system is more interested in dollars than in preventing disease.  He called on patients across the country to get behind the NCAS and help facilitate change in our country.  He challenged us to keep our elected officials accountable.  Visit NCTACancer.org for more information.

During the break, I had an opportunity to talk further with Beth Hodge, a CML Survivor from Atlanta, GA.  Beth does quite a bit of grassroots work in the Atlanta Metro Area and found Carolyn's Hope while visiting the Life with Cancer Blog on Glamour.com.   Read about Carolyn's Hope on the blog.

Training tracks began following the Keynote and we adjourned to various locations for concurrent sessions.  I chose Fundraising and Advocacy.  Those following this track were divided into groups of 7 and given specific tasks for the day.  Our first project was to create, produce, and submit a "television" commercial to solicit funds to help make cancer a national priority.  Our commercial, entitled "Why Not?" asked the question "Why donate to help make cancer a national priority?", to which we emphatically asked "Why Not?"  Between the question and answer, survivors and caregivers shared their personal "why".  All of the commercials were poignant and beautifully conveyed why this fight is so important.  It not only affects the patient, it effects everyone in the family and circle of friends.
Other speakers brought information on creative fundraising, successful recruiting of volunteers, legal issues and non-profit filings.  We ended the session with Cindy Graf sharing the lasting tribute to her mother which not only honors her memory but raises awareness and funding for cancer research and initiatives.  For more on Cindy's work, visit www.adolphinspromise.com  You will see Cindy and her uncle Johnny featured in the Day 2 video added below.

Our last Keynote speaker of the day was Dr. Harold Freeman of the Ralph Lauren Center for Cancer Treatment and Prevention.  Dr. Freeman share with us his dream turned project call the Patient Navigation Institute.  Dr. Freeman works to provide quality care and instruction on a variety of treatment issues to the community of Harlem.  Dr. Freeman's work has led to the National Patient Navigation Act that sets in motion the creation of this resource for everyone in this country.
Thank you Dr. Freeman for caring for "the least of these" and helping to insure quality treatment for EVERY HUMAN BEING, regardless of race, sex, lifestyle, religion or creed!

LiveSTRONG!

Day 2 Video




Saturday, July 26th

Wow!  This has been an event to remember!  Not only have we learned so many things to take back and put into action in our own communities, we've heard countless stories of strength, courage, and HOPE!
Today's Keynote speaker was Stephanie Spielman, breast cancer survivor, mom, and wife to former OSU football star and All-Pro NFL linebacker Chris Spielman.  Over the course of her journey, she has seen, first hand, the importance of being you own best advocate.  She's also seen her family rally around her - her husband Chris actually took a year off from professional sports to be Mr. mom to their kids, cook, maid, and caregiver.  Stephanie shared that Chris even sported the "same hairstyle" when she began to loose her hair during chemo treatments  Today, Stephanie is an advocate for women facing breast cancer and works daily to ensure the receive the best care available.  Click here to learn more about Stephanie and her crusade against this disease.

After the keynote, we dismissed to our training tracks.  Today, we discussed recruiting and maintaining volunteers, working with your local media groups, "hip" new social media resources, and marketing.  We ended the day by creating a fundraising event, working the plan, and executing the event...all with only 20 minutes to create the plan, and 30 minutes to hold the event.  It was amazing what each group accomplished is such a short amount of time.

Tonight, we visited the Columbus Zoo and enjoyed time to mingle and learn more about each other's unique cause.  I continued to talk with Matthew Zachery, founder of the I2Y movement - Im Too Young For This!, sharing some of our objectives and directions.  He's invited us to be a part of his radio show when we launch some new initiatives this fall!  I also had the opportunity to speak with Doug Ulman, President and CEO of the Lance Armstrong Foundation and share some of the things we hope to accomplish in the CML community. 

I also wanted to take a moment to remember my mom, Carolyn. It was one year ago today (the day, Saturday...not date 7/28) that she made her home going.  I had so many mixed emotions prior to attending the Summit.  Today has been a day of both sadness, tears, laughter, and strenthened resolve to continue the fight in her name.  I profoundly miss her and love her more each passing day.  She truly was my best advocate and wind beneath my wings.  We carry on, helping others in her memory!

I love you, Mom!

Well, its off to get some rest for tomorrow!  I will post more soon!  Rumor has it that we might have a very special guest today.  The LAF neither confirms or denies this rumor.  I suppose we will see...stay tuned.


Sunday, July 27th

It is hard to believe that the Summit is almost history.  Our general session this morning is a panel discussion with Dr. Bernadine Healy, Dr. Sanjay Gupta, and Dr. Gordon Gee of OSU.  We will also review some of the work that has been going on in each of the training tracks.  It should be an energetic, fast paced morning.

In the training tracks, many of the groups had to produce their own commercials for raising awareness.  During the review process, we have seen many touching things and have also shared laughs and memories of both the journey and remembering the lives of those who have not been as fortunate.

Doug Ulman and Lance introduced the panel members and served as moderators for the discussion.  Dr. Healy fielded several questions, the first on how we can make cancer a national priority.  Later in the panel discussion she shared her thoughts on the best way to handle inadequate care and or attention from your primary care team.  She reminded delegates that we must each be our own best advocate and that the most effective ways to insure that is to seek out second opinions if we have any doubts.  She also shared that many Universities and medical schools are working hard to ensure that all med students understand that the patient IS a part of the care team and it is critical that their opinions be heard and their desires be considered in the treatment.  She said by getting second opinions, we affectively "shut down" those who do not consider the patient's wishes.

Dr. Gupta fielded a question regarding searching for a cure and how Big Pharma could better coordinate their efforts to move ahead with the task of ending this disease.  He was realistic in what he shared and although there appears to be many exciting things on the horizon, we, as patients, families, and mostly CONSUMERS must hold them (pharmaceutical companies) accountable. 

During the panel, the issue of finding the best care resurfaced and Lance shared some of the things that happened to him when he was first diagnosed.  He reminded delegates that he was still virtually unknown at the time.  His first care team from his home state......he wouldn't call the name but said - "I grew up in Plano, TX and Texas has great cancer groups".  Although he said those words, his tone and body language delivered the message that he did not receive the care he thought he should.  He shared that finally his mother demanded his records and he sought treatment at another institution.  Following the move to a new care team, he received treatment that got his disease under control and ultimately helped him go on to win the Tour de' France 7 times.  He shared that if he had continued the first line of treatment suggested by the first team, the drugs would have caused lung damage and his prognosis was not good.  He was told to go home, take the drugs, and find something else to do with his life.  He's sure glad he didn't take their advice.

Following the panel, the closing ceremony began.  I have linked to a YouTube video from a fellow delegate so that you can see parts of the event.  This time was especially touching as we heard from survivors, those just diagnosed, family members, and others touched by cancer.  You can view several videos by searching "LiveSTRONG Summit" on the YouTube site.



Following the closing ceremony, we all loaded buses and headed to the airport.  The wait times were spent with delegates huddled in corners, airport restaurants, and common areas to share ideas and contact information .  No time was wasted as we all wanted to make the most of the event and to gather all the information we could to help make a difference in our local communities.