Innovation Is the Star @ TEDMED

It’s Wednesday evening, Stacy Lewis, YSC’s chief program officer and deputy chief executive, and I just completed the fifth session of TEDMED 2013, and we are halfway through the conference. There are over 1,800 people in attendance from what seems like every genre of medicine and technology, and we fit perfectly somewhere in the middle.

5 steps towards participatory medicine from Susan Desmond-Hellmann, MD, MPH & the ninth Chancellor of the University of California at TEDMED today.

5 steps towards participatory medicine from Susan Desmond-Hellmann, MD, MPH & the ninth Chancellor of the University of California at TEDMED today.

Stacy and I received frontline scholarships to attend and have met fascinating people, which has driven discussions outside our normal thinking — exactly the point of being here.

The sessions have tried tackling big data, translating the untranslatable, shifting the patterns of power and mixing the common models we are using in the medical world. So far, the conference is grounded in networking and meeting people outside of your normal space. The culture is driven by strangers shaking hands with everyone they can to enhance their business and increase innovation.

My two favorite speakers from today were Zubin Damania (also known as ”Z-DOG MD”) the director of healthcare development for Downtown Project Las Vegas, and Peter Attia who is the founder and President of Nutrition Science Initiative. Both men were incredible speakers — the type where you hang on their every word and feel saddened when their 20 TED minutes are over.

If you’d like to follow the conversation and learn more about this one-of-a-kind event, here are some some sites that can keep you updated through the end of the conference tomorrow:

TEDMED 2013 website

TEDMED Facebook page

#TEDMED Twitter Feed

Real-time feed: http://www.tedmedlive.tv/
(Org name = TEDMED Twitter
Affilaite ID = L12277)

I am looking forward to the next two days and interacting with all of the people I still have to meet. More to come …

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On the Ground in Houston, TX

The saying, “everything is bigger in Texas” is right on.  The weekend of March 21–24 was huge for YSC and survivors, volunteers and the medical community in Houston.   As YSC’s South Regional Field Manager, I had the pleasure of visiting our constituents and representing YSC at events raising awareness of breast cancer in young women.

Back row, from l to r:  Nancy Piña, Robert Piña, Robin Myers, Valerie Loper, Sandy Castillo, Marvin Sharp. Front wow, from l to r: Cindy Kicinski, Michelle Piña Amos

At the Houston Aeros Breast Cancer Awareness Game, March 23, 2013. Back row, from l to r: Nancy Piña, Robert Piña, Robin Myers, Valerie Loper, Sandy Castillo, Marvin Sharp. Front wow, from l to r: Cindy Kicinski, Michelle Piña Amos

Our Texas State Leaders,  Michelle Piña Amos and Sandy Castillo (also a Face 2 Face Leader), were my fantastic hosts for the weekend.  Since it was Texas, their hospitality was HUGE, and their planning and preparation for my time in Houston was outstanding.  Our weekend was packed with meetings, tours and events.

After arriving Thursday evening, I met Sandy to discuss our plans for the weekend and catch up since we last saw each other at C4YW.  We strategized and even convinced the restaurant manager where we ate to host a breast cancer awareness fundraiser this summer.

A busy Friday was highlighted with meeting Roberta Levy Schwartz, one of the co-founders of YSC.  Sandy and I met Roberta for lunch at Methodist Hospital, where she is an executive vice president.  We toured the Cancer Center and saw the infusion rooms, the meditation area and met hospital staff.  It was a delight meeting Roberta and sharing my experiences as the South Regional Field Manager.
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Face 2 Face Networking
State Leader Program
Newly Diagnosed Resource Kit

 

After our visit to Methodist, Sandy and I met with Alicia Kouri and Josh Fisher of the Houston Aeros hockey club to finalize the details of the next day’s huge awareness event to benefit YSC.  The Aeros are truly committed to community partnerships and supporting YSC’s mission.

Our last stop was at the Breast Health Collaborative of Texas, where we met Program Manager Kerry Ingram.  Kerry was a wealth of knowledge and provided us with local resources for the ResourceLink database. It was great to see our Newly Diagnosed Resource Kit on display in their office and share other YSC resources.

Prior to my visit, Michelle and I had communicated several times but had never met in person, so I was really looking forward to meeting her.  Over dinner Friday night, we talked for hours!  Michelle shared Houston’s history as well as the history of YSC there, and we worked on plans for the next day’s events.

Saturday was the day that I had been looking forward to for months.  Early morning found us setting up our exhibitor table at the Hereditary Breast and Ovarian Cancer Patient Education Conference at M.D. Anderson.  Michelle and I represented YSC, sharing information with survivors, caregivers, the medical community, volunteers and staff from other local organizations.

The conference was packed with sessions on nutrition, sexuality and intimacy, oncofertility, reconstruction and more.  The women stopping by our booth were excited to learn more about YSC and how we could support them.  We met a lovely young woman who was interested in attending the hockey game that evening.  I shared my tickets with her and was excited to see her and a friend later at the game.

After the conference, I went back to the hotel to get ready for the Houston Aeros Breast Cancer Awareness Game benefitting YSC.  Walking in, I was greeted by a sea of pink.  There were exhibitor booths, t-shirts designed by the players’ wives for sale, autographed pucks for sale and a massive silent auction.  YSC volunteers worked hard spreading the word about YSC, selling pucks and passing out thousands of pink gloves to the over 9,000 in attendance.

Local Girl Scouts celebrated their 101st anniversary at the game with a Hockey 101 class that included a patch, participating in a pink glove dance after the first period and raising awareness. Even though the Rochester Americans won in a shootout, the game was a huge success!

The Houston Aeros are donating over $7,000 in proceeds to YSC.  Our thanks to the Aeros for this partnership.  It was a pleasure to work with all the staff involved, particularly Alicia.  Her attention to detail and tireless efforts made for a truly amazing evening.  In a quote from Alicia, I am extremely thrilled with the evening. Everything from the vendors to the silent auction went great. YSC is an incredible organization, and I am honored to have worked with them. The Aeros hope to continue our partnership in upcoming years.

After a quick breakfast debrief on Sunday, I headed home to Indianapolis.  Monday back at work was busy with sending out thank you notes and follow up messages about YSC resources and materials that are available to those I met while in Houston.  I look forward to continued partnerships in Houston and extending our reach even farther across the HUGE state of Texas!

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Join YSC at OMG 2013

OMG 2013 LogoBeing diagnosed with cancer at a young age sucks. There is really no other way to say it: It sucks.

Some of us feel suddenly alone and “different” from our friends – and who can blame us?

Some of us feel angry that the illusion of immortality was stolen from us too soon – I know I have felt that way.

Some of us feel scared for the future and wonder what “new normal” really means … ok, maybe all of us feel that way.

The point is, if you are under 40 and have been diagnosed with cancer — whatever type of cancer it is — it all sucks!

There is a very special gathering in Vegas this year for all young adults with cancer, and I am honored to be a part of it and attend. It is called the OMG! Cancer Summit for Young Adults. Brilliant, right?

OMG is about walking into a giant room and seeing hundreds of young people and saying to yourself: “They all have cancer like I do?” or “I can’t believe how many of us there are.” That is what OMG is about. It is about seeing, feeling and knowing that you are not alone.

The conference is April 25–28th, and there are sessions on genetics and research, the ePatient revolution, caring for the caregiver, how cancer impacts all parts of you, healthcare legislation and reform, pain management and so much more. The point is that all young adult cancer survivors will find something to help them — it is made specifically for us — and it is awesome!

For all you young breast cancer survivors, I would love to see you there!! At the conference, YSC will be hosting a reception just for young breast cancer survivors to help connect our under 40 survivors from across the country. Here is a special YSC code to get a discount on registration: OMG2013YSC.

We are going to have lots of fun giveaways and YSC stuff, so I hope you think about attending! Once you sign up, you will receive a special invitation from me with the event details.

YSC is a strong partner of Stupid Cancer and OMG, and I am proud to help spread the word through our network about this amazing conference.

Think about it, you probably know someone or know someone who knows someone, who was diagnosed with cancer (not only breast cancer) before the age of 40. It is important that in the young adult cancer movement we support ALL young adults with cancer and ensure that they have the support and opportunities to meet other young survivors that we have here at YSC.

Please join me in helping to spread the word about this remarkable conference, and please ask anyone you know that decides to attend to introduce themselves to me in Vegas; I would love to meet them!

So one last thing, the infamous OMG road show begins soon. It is worth following and absolutely hilarious; yes, sometimes we have to make cancer funny. Here is the trailer video:

See you in Vegas …. this is going to be EPIC!

 

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Categories: Survivor SYNC

Innovation + Medicine = Change @ TEDMED

If you were to buy a new car today and drive it from New York City to Los Angeles, stopping along the way at dealers to service the car, when you arrived 3,000 miles later, the dealer would know exactly what was done to your car throughout your journey and what needs to be done next.

TEDMED_WH_RGBBut, when we go to doctors, we fill out paper forms and give our medical history every time. Why do our cars get better care then our bodies? Why hasn’t medicine kept up with the times to ensure the most effective care for all of us?

Every one of us has experienced frustration with a situation like this of some kind … and, to be honest, it is getting old. It is time for change. But the problems are so huge and so complicated that I have often wondered what would be needed to start moving us in the right direction. I think I have found one of the answers: TEDMED.
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TEDMED
TED Talks
Great Challenges Day
 

 

In a few weeks, from April 16–19, Stacy Lewis, YSC’s Chief Program Officer and Deputy Chief Executive, and I will be attending TEDMED for the first time. TEDMED is where innovators and leaders from many disciplines come together to try and create a better future in health and medicine … I like to think of it as Silicon Valley meets medicine.

If you are not familiar with TED Talks, these are 20-minute talks by leaders from every field to help push thinking and innovation. TEDMED is TED Talks, focused on medicine … with a twist. It is a large conference in D.C., where leaders from medical colleges, teaching hospitals, government agencies and nonprofit institutions from around the world come together to create a better future in health and medicine. Real change by the right people: Cool, right?

Stacy and I both received scholarships to attend and will be participating in a variety of different conversations — to ensure the voice of young women with breast cancer is heard — to push the thinking that we know needs to be pushed.

One part of the conference that I am most excited about is the Great Challenges Day. This part of the conference is about leveraging the science of storytelling and working in small groups to search for a more complete understanding of the key issues that impede a healthier future. I will be participating in the following conversations:

  • The Caregiver Crisis: Caregivers have few tools, few support systems and receive minimal, if any, training for these responsibilities. What innovations can we develop specifically to support the caregiver community?
  • Medical Innovation: Which proven strategies from Silicon Valley, the Moon landings, the Manhattan Project or other successful models could be applied effectively to achieve faster, yet less costly innovation in health and medicine?
  • Sleep Deprivation: What is the full range of causes (social, medical, technological, economic, etc.) that engender and promote this widespread problem? What are the first-order and second-order effects, and beyond, of sleep deprivation? What would it take and what would it mean for America to view sleep as the third pillar of total health alongside diet and exercise?
  • The Role of the Patient: If patients retain their traditional role, does that mean doctors are in charge? Are both in charge somehow? How is “power” shared among all stakeholders and how should it be shared?
  • Managing Chronic Diseases: How can we innovate to help patients prevent, manage and treat their chronic diseases and achieve better outcomes?

 

At the same time, Stacy will be participating in these conversations:

  • Inventing Wellness Programs: What kinds of innovation should we be thinking about and how can we bring them to market as soon as possible?
  • Promoting Active Lifestyles: How do we invent broadly popular and achievable ways for people to become more active, so as to replace those “lost” energy expenditures?
  • Impact of Stress: Given that stress is difficult to quantify and varies from person to person, how do we better understand the role of stress in the larger picture of health?
  • Addressing Healthcare Costs: How do we foster a thoughtful, civil dialog that focuses on science and the public interest, in a way that has a reasonable chance of creating an approach we can all support?
  • Impact of Poverty on Health: America would be better off if everyone were healthy, regardless of income, especially since government programs cover some costs directly. How should we think about the role and impact of poverty within the larger question of health?

 

The whole point of TEDMED’s Great Challenges Day is not to solve these complex problems but rather to provide America and the world with an unbiased view of these challenges, incorporating thoughtful and very different perspectives. TEDMED’s belief is that through an open, ongoing dialog we can foster a much better understanding of each challenge and then make real change that will make a difference.

I am honored to have been invited to participate in this important conversation and will bring what I learn back to YSC and the community of young women diagnosed with breast cancer we serve.

More to come …

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Tour de Pink 2013 … It’s Time!

YSC_Tour_4C(1)For many of us across the country, it feels like spring will never come; as winter drags on, the last thing many of us are thinking about is our bike. Actually — I am not sure if that is true — I have thought about my bike a lot and day dreamed of long rides in the warm sun … but when will spring come?

YSC Tour de Pink® (TdP) changed my life last year. I am not overstating or being dramatic — it really did. Because of cancer I did something that I never would have been able to do before: I rode 200 miles on a bike in three days. I am not saying that it was always pretty or graceful, and those who rode with me know what I mean, but that is not what matters — what matters is I did it.

On the first day of TdP East Coast last year, I rode more miles then I ever had in my life … before the first rest stop. Now I am NOT suggesting that new riders follow my lead; the point is that by the first rest stop I was already in uncharted territory personally! And while I was LITERALLY the last person to arrive at the finish that day — I was so proud of myself that I was delirious with happiness.
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TdP East Coast
TdP West Coast
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The people in my life that know me the best supported in me in my training; but I know (because they admitted it) they thought that I would spend a lot of time in the SAG vans and not ride every mile. While I LOVE the SAG vans — the 2012 TdP East Coast was about me finishing every mile under my own power … I made a commitment to do it, and that was final. And I did. My doubters have all admitted that they were surprised. Translation: Anyone can do this if they put their mind to it.

Queen quoteSo here I am, six months after finishing the biggest athletic accomplishment of my adult life. I have gained weight and not touched my bike in five months. What is up with that?

But April 1st is almost here — the end of early registration for TdP — and I am forced to remember how I felt a year ago … terrified and uncertain. A year ago I could hardly ride on the gym bike on the lowest level for 15 minutes (I had not ridden a bike since I was 10) … a far cry from 200 miles between Philadelphia and D.C.

So my point is: It is time. If you have thought about riding TdP, now is the time to register. If you register by April 1 you get a pair of arm warmers, which is hella cool, and you also put a date in your calendar to works toward.

Even though it is still cold outside for many of us and fall seems like a lifetime away, we all need something to work towards that not only supports a good cause but helps us all to remember to focus on ourselves in our busy life. We all should give ourselves more attention; so join me in riding and doing something for ourselves!

I am riding in both rides again this year. If you want to ride, raise the $2,500 minimum and are looking for a team to join, let me know.

TdP East Coast is September 27–29, and West Coast is October 18–20. Sign up and make the commitment that you know you want to make — it’s time!

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Categories: Taking my Body Back