Progress: LIVESTRONG Young Adult Alliance Update

I spent my entire day yesterday (8:30 am – 5 pm) sitting in a conference room talking about cancer. Some could assume this isn't your ideal day and might be your stereotypical long drawn out board room meeting that had much to be desired. To me, it was nothing of the sorts!

I was surrounded by 20+ friends and partners for our quarterly face-to-face meeting of the LIVESTRONG YOUNG ADULT ALLIANCE. It was informative, inspiring, enlightening and motivating. Surrounded by some of the top oncology professionals, researchers and fellow patient advocates in the country, it’s incredible to see the progress that has been made in the world of adolescent and young adult oncology.

Don’t get me wrong, we have a long way to go, but for today we can say we’re on the right track and most importantly, working together – Medical Professionals, Researchers, Government Agencies, Patient Advocacy Groups and Medical Institutions. The Alliance is a coalition of 70+ other organizations that weren't at the meeting but are doing the important work needed day in and day out to support young adults fighting cancer.

Also special about this meeting was we were just down the street from the National Cancer Institute and we had several of their key staff attend the meeting to report on progress they’re making in implementing the recommendations outlined in the AYAO Progress Review Group.

A couple exciting resources I learned about yesterday:

LIVESTRONG has launched a portal of young adult specific resources

LIVESTRONG hosts young adult podcasts

National Cancer Institute has a toll-free # and LiveHelp on-line chat service free to all cancer patients: 1-800-4-CANCER and LiveHelp On-line Chat

Learn more about the work of the LIVESTRONG YOUNG ADULT ALLIANCE and our work to implement the AYAO PRG

LIVESTRONG!

Brock Yetso
Executive Director

Nancy's Cancer Journey

Cancer is the best thing that has ever happened to me, in a weird way, that is... Just after my 30th birthday, the last thing I would suspect would be Cancer! Let alone, it was in my Brain! What!?! I learned a great deal through my journey dealing with my diagnosis of a Grade III, Anaplastic Astrocytoma in the right frontal lobe of my brain.

After my craniotomy, it took a few days before I was able to move my left side. The tumor was located in the area of the brain that controlled mobility, decision making, personality, etc... First, I was able to move my left leg and then soon my left arm came back. I had trouble thinking of words to say. I knew what I wanted to say but I had a hard time retrieving the word. I went through intense rehab to learn how to do daily activities like thinking, walking, bathing, etc.. It was so frustrating because I knew how to do it but my brain wouldn't send the message to the parts of my body to allow me to do such a simple act of opening and closing my left hand. When I saw the progress of how much I was improving, it made me stronger and to want to keep fighting!

Soon after I gained strength back, the next phase of my journey was treatment; so this stuff never comes back and I can continue to enjoy a full and happy life! I endured 6 1/2 weeks of radiation in conjunction with chemo by pill. My father and I would take the hour long trip to get my "spa treatments" at the hospital and the hour long trip back home. During this time I thought, it was a good way for my dad and I to spend quality time together. It's not ideal, but you make the best of what you got!

Last Day of Radiation!

The final phase is 6 rounds of oral chemo. I'll be finished right around my year anniversary of when I was diagnosed. In a year I have learned so much about myself and about life. I always thought I'm the lucky one. I'm so glad this happened to me! The lessons I learned through this journey are priceless! My life is now so much richer in so many ways!

My family and friends were a great support but I needed more. During treatment, I felt alone. I'm so glad that I found UCF! I wanted to talk to others around my age that were going through similar situations that I was going through. It really helped me cope with my diagnosis, telling my story out loud to complete strangers. I have met such helpful people and listened to inspiring stories through this organization. All the people I have met through UCF I feel like I have a connection with...and I do, Cancer, that's a good thing!

Nancy Arthur
Brain Cancer Survivor

People, Passion & Mission

“The number-one resource for a great social sector organization is having enough of the right people willing to commit themselves to mission. The right people can often attract money, but money by itself can never attract the right people. Money is a commodity; talent is not. Time and talent can often compensate for lack of money; but money cannot ever compensate for lack of the right people.”

Jim Collins
Good to Great and the Social Sectors

Teamwork, collaboration, partnership, working together – these are terms often thrown around in offices and locker rooms as the keys to success. While I agree these are all very important and critical to accomplishing great things in this world, I believe there is little bit more to it - please indulge me for a minute.

As Jim Collins, author of Good to Great and the Social Sectors says it best, it’s about “having enough of the right people willing to commit themselves to mission.”

I’ve had a couple experiences this past week that have supported my belief and Collins statement. Equally important to the often cliché mantras mentioned above are the people and their stories that lie behind the formal collaboration or partnership. No where did I witness this more than through the work of our own organization this past week. We held the kick-off event for our 2009 Team Fight season. For all intensive purposes, this was a group of strangers coming together as part of a team to train hard and raise money and awareness to support the fight against cancer. The kick-off had over 100 people in attendance, several community partners and inspiring talks from several UCF ambassadors. Individuals, community partners, bike shops, running shops and more – all putting their personal agendas aside to support something greater than all of us – quality people doing important work. By the end of the season, they will all be a closely knit team that is working together and collaborating effectively – but what makes them so special right now is they are generous people with big hearts committed to a common mission.

The next day I further witnessed my belief by spending the day with a close friend and UCF partner, Jonny Imerman. As Jonny mentioned in his recent blog entry, we spent the day visiting patients and families at the University of Maryland Greenebaum Cancer Center where we run a Young Adult Navigator Program. Chaperoned by our Young Adult Patient Navigator, Elizabeth Saylor, the three of us spent quality time with patients and the medical staff sharing information, stories and ideas on how to improve the experiences of young adult patients being treated there. The UCF and Imerman do have a formal partnership, but it's the passion and energy behind people like Jonny that make it so special.

On the heels of our new President asking everyone to take individual responsibility for re-building this country and preaching hope, virtue, values and accountability and in wrapping up what has been a special week for me and our organization, I thank everyone for sharing their time, energy and stories with the UCF and encourage more people to get involved. During a time of never before seen economic challenges for many non-profits and all of our country, finding great people to commit their time, energy and hearts to a mission is critical. As Collins would say, “money cannot ever compensate for lack of the right people.”

Brock Yetso
UCF, Executive Director

Imerman Angels and Collaboration

I just had an amazing time in Baltimore/Washington DC visiting the Ulman Cancer Fund team – and TEAM FIGHT !!!

I was flattered to spend last Wednesday in the Ulman office !! Tall ceilings, bold blue walls – great space. Much better was the passion and energy that fills that space !! What a fun crew over there !!! And most importantly passionate about reaching more young adults with cancer, and finding ways to MAKE THEIR LIVES BETTER !!!!! Great stuff.

I took my shoes off right away in their office (as I NEVER wear shoes in my office - who does, really?) and shocked them a little bit, but hey, that’s how cancer peeps roll !!! Casual and comfortable – what other way is there? HA!

That night, I was honored to speak to TEAM FIGHT, a group of survivors, caregivers, and supporters who engage in athletics to support UCF !!! I met two identical twins (one is a cancer survivor) who are also my age (33, yeah...I know I’m old), whose combined weight must be south of my weight, and both run marathons in the “2’s” !!!!! That means under 3-hour marathons !!!! Blown away by these two girls !!!!

After my speech, many of the cancer survivors there approached me to join the Imerman Angels network. Ulman continues to help us build our survivor base, so we can make better matches for those in the fight !!!

For those who haven’t yet heard of Imerman Angels, here’s what we do everyday:

Imerman Angels is a “one-on-one cancer support service” that partners a
person fighting cancer with someone who’s beaten the same type
of cancer. One-on-one relationships give a fighter the chance
to ask personal questions and get support from someone who is
uniquely familiar - a survivor. The free service helps anyone touched by any type of cancer, at any
cancer stage level, at any age, living anywhere in the world.
5-Year Mission: Beginning January 1, 2013, every cancer fighter in the U.S. will have free access to a cancer survivor within 24 hours of being diagnosed.
Www.ImermanAngels.org – please refer anyone in the fight or any survivors and we’ll get him/her hooked-up for support ! Thanks !!

(I was diagnosed with testicular cancer when I was 26, and simply couldn’t find a young survivor !! So, we’re building Imerman Angels so that EVERY cancer fighter can find a survivor !!!)

The following day, Thursday, Elizabeth and Brock guided me through the U. of Maryland Hospital / Greenebaum Cancer Center. We met with social workers, nurses, technicians – and the best part: young cancer fighters in treatment who needed a PUMP-UP !!!! I CANNOT thank the UCF crew enough for helping me spread the Imerman Angels mission to the hospitals with their local connections, and then the chance to help some of the youngsters in the fight !!! There is nothing I enjoy more than connecting with the young ones and getting them PUMPED UP to overcome !!!!!

What a trip. Amazing time. It was too fast. And Brock’s guest bedroom was so comfortable, sorry you all, I may be coming back sooner than you’d like !! May have to force me out of town !!!!

UCF I like a @#$% of a lot better than UFC !!!! KEEP UP ALL YOUR GREAT WORKS CREW !!!!!!

Wishing a strong day to all the cancer fighters, survivors, caregivers, and supporters out there !! All of my best wishes in good health !!!

Jonny Imerman
IMERMAN ANGELS
Www.ImermanAngels.org

Why Laurel Fights

My sister Bec and I were thrilled to be a party of the kick off event for Team Fight '09. We were so happy to meet so many amazing people connected to the Ulman Cancer Fund and of course to catch up with some familiar faces. It was truly an inspiring night for us to learn about the various programs the UCF supports and to meet our fellow teamFIGHTers.

One of the themes of the night was "Why We Fight". Everyone involved comes to Team Fight with a different reason for fighting, but we all have the same goal: to raise awareness and funds to support young adults affected by cancer (and to cross that finish line with a smile!). I was able to share a little of my story at the event, but I thought I'd share with you a little bit more about why I fight.

Last year, my first year as a professional triathlete, I was invited to race in the Life Time Fitness Triathlon in Minneapolis. This race is pretty much the All-Star game of our sport. A small, select field of the best triathletes in the world, Olympians from all over the globe -- and me! I was incredibly honored just to be among this group. As we jogged to our starting positions at the edge of the lake, the announcer read off the achievements of the athletes, "triple world champion", "Ironman champion", and then, "the only rookie in the field, twin sister of Bec Wassner and cancer survivor, Laurel Wassner". I will never forget hearing those words. And, I'm pretty sure they came as a surprise to most of the people in the crowd. How could a scrawny, bald cancer patient become a contender on the world stage? I will tell you how: because I FIGHT! I fight for all of those battling disease, I fight to raise cancer awareness, I fight to prove the
doubters (yes, there are actually doubters!) wrong, I fight for all of those who are unable to compete, I fight to inspire, I fight to win.

Bec and I are honored to represent the Ulman Cancer Fund and Team Fight, and we will wear our yellow uniforms with pride as we travel and race around the world. We hope that throughout the season we are able to inspire Team Fighterers, just as they have inspired us. And, as Brian reminded us on Wednesday, as we raise more and more awareness, we will change more and more lives.

Thank you all for fighting!

Laurel Wassner

Professional Triathlete

Cancer Survivor

Global Cancer Campaign

I am heading down to Australia this week to help launch the LIVESTRONG Global Cancer Campaign as Lance returns to professional cycling at the Tour Down Under.

This is an exciting time for everyone who is interested in the global cancer movement. There are way too many people suffering in silence around the world and we need to raise awareness of the disease, reduce the stigma, engage world leaders and also mobilize grassroots advocates.

In 2009 more than 8 million people around the world will die from this disease and there are more than 25 million cancer survivors alive today and they deserve the opportunity to live strong.

It has been 1274 days since Lance rode professionally and in that time more than 27.5 million people have died of cancer. This is not acceptable and you can participate by following this campaign online at www.livestrong.org and also on Twitter at www.twitter.com/livestrongceo and www.twitter.com/lancearmstrong

Doug Ulman
Founder – Ulman Cancer Fund for Young Adults
CEO – Lance Armstrong Foundation

WANNA FIGHT?

January 14, 2009 will mark a very important time for UCF. This will be the launch of TEAM FIGHT 2009. We are very excited about the response and emotion generated thus far. We have had an overwhelming amount of people looking to “FIGHT” with us! Many people are catching a glimpse and asking “what is TEAM FIGHT about?”, so I will try to explain.

Team fight is about awareness and support. It is about survivors, friends and family. Its about spreading the word about the challenges that young adults face when battling cancer or supporting a loved one who is fighting. It’s not about the RACE. It’s about the chance to help others by raising awareness for those who are not as fortunate.

The TEAM is growing and we are gaining an even larger billboard than we had thought possible. The goal is to unite and share the message of the Ulman Cancer Fund for Young Adults and through the dedication of staff and supporters, and that is what is happening.

So if you see a SEA of yellow and blue at the Howard Live Festival, Columbia Triathlon, Survivor Harbor 7, Iron Girl Triathlon Columbia, or the Baltimore Running Festival, GIVE A YELL. These people are truly increadible and have dedicated their time and energy for a great cause.

We all know someone who is affected by cancer so………WANNA FIGHT???????

Join us at http://www.teamfight.org/
Brian
UCF Staff