Remember when Facebook and Twitter first burst onto the scene?  

In a matter of moments you were connected to every friend you ever had in your lifetime, you connected with world and international news reporters and celebrities and suddenly you were “in the know” about everything you were interested in. 

I was “friends” with Oprah Winfrey even though I had never met her before.  I gave opinions on news stories and those reporters answered back and followed up on their stories.  I was able to tell a brand that I liked or disliked something and have someone respond that they had heard my concerns.  Wow.  Social media was like the internet on crack.  (Disclaimer, I’ve never used crack by the way so I hope the reference makes sense)

Then Facebook morphed and changed with many upgrades and additions.  Now there were different distinction to pages and interactivity was limited by page and account settings.  Add in edge ranking (I could speak on this for an hour) and social media business users started to self-promote more and interact less. Pages on Facebook were pushing the same content onto Twitter without having someone present to monitor Twitter to answer any tweets or engage their followers. The age of social media management tools began and with one click the same content could be cross pollinated across multiple social media platforms.

At its start, social media shrank our world into 140 characters or entertaining images.  A thumbs up and a share button kept us connected to family and friends and personal interests across the globe.   Scrolling down your news feed or twitter feed kept you informed on global and local news as well as celebrity gossip.

It’s still that way for the most part.  Instant information is the amazing thing about social media.  But the connectivity isn't the same.  The world of social media is growing larger.  Page owners (business leaders, brands, celebrities) don’t respond to posts as often as they once did.  Most posts are self-serving and the feeling that you are “in the know” just isn't there anymore. 

Oftentimes you feel like posts coming from leaders and brands are micro commercials…You either turn them off (turn off notifications) or you just start to tune them out.

September 13, 2012 marks 10 years that I have been a lung cancer patient advocate.

So much has happened in my life within those 10 years. I’ve had a lot of personal and professional successes. I founded a nonprofit and co-created the first online support network for people affected by lung cancer in 2002. I trained, studied and collaborated with national cancer advocacy and support groups for several years. I’ve encountered thousands of people affected by lung cancer and created support services and connections for people globally. I founded the first lung cancer event in my community, started the first lung cancer support group in the state of Texas, partnered with a strong research organization in 2006, (LUNGevity www.LUNGevity.org ) and ultimately came to work for them full time in 2010.

In just the two and a half years that I’ve been on staff with LUNGevity, the Foundation has funded 5 million dollars in lung cancer research- Impressive!-But just a drop in the bucket for what is needed to find a cost effective non invasive early detection test and to find targeted therapies that will work to stop lung cancer growth and save more lives. The work continues. I want us to tip the current lung cancer statistics so that one day there will be more survivors than fatalities from lung cancer and a world where detecting lung cancer early will be the norm instead of something that happens in just a handful of people. We want a world where people survive lung cancer, not die from it.

Although I’ll admit to being LUNGevity’s biggest fan and the incredible growth of this organization has been breathtaking at times, I’m not writing today to toot my own horn or congratulate the Foundation on jobs well done. Lung cancer is still the deadliest cancer. That fact hasn’t changed in my decade of advocacy and sadly the statistics are virtually the same. None of my personal efforts or accomplishments has changed those facts. I’m not a scientist or a medical expert- those folks are HEROs in my book. And even though I know for certain that there are some amazing researchers and scientists and clinicians who are working tirelessly to make an impact against this disease, there’s more work to be done.

My personal mission has been on emotionally supporting the patient and family through the many stages of lung cancer. The scientific and medical advances for lung cancer haven’t advanced quickly enough and some people simply run out of time.
This past decade is a bittersweet reflection for me. My dad passed away from lung cancer and my mom died suddenly 3 years after him. Many patients who later became dear friends and colleagues have passed away from this disease and funding for lung cancer and awareness about the disease is still lacking compared to other major cancers. Losing my family and friends has been devastating and discouraging. At times, I’ll admit, the fight against lung cancer has felt like an uphill battle.

It’s during those uncertain and dark times that I remember the words of dear friends, survivors and co-survivors, who have become my family over the years. They encouraged me to keep putting one foot in front of the other and to always focus on hope. They support LUNGevity by sharing their survivor stories, attending events, helping raise awareness and helping LUNGevity become the largest private funder of lung cancer research in the nation.

They let me know that every step we take is making a difference in their lives on a daily basis and a great difference on a national level thru the research LUNGevity funds. They let me know that even after a decade in the lung cancer community with roadblocks and obstacles; I can still have HOPE- because they are alive. They tell me that because of us, their lung cancer experience has been a little softer, and that they have hope for the future.

I sometimes think about how different things would have been had my dad been diagnosed in 2012 as opposed to 2002 and the possible benefit early detection would have had on his survival. I think about how comforting it would have been to have had access to an organization like LUNGevity when he was first diagnosed and programs like LifeLine that offer one-on-one support. My dad is never far from my thoughts.
Lung cancer invaded my life, changed it forever, turned me into an advocate and eventually gave me my life’s mission.

I’m ten years older today although I don’t look like I’ve aged a day! (Wink) I am still driven in my mission to support people affected by this disease and dedicated to ensure no one ever has to walk this walk alone. I can’t stop now. After all, 41 years ago President Nixon officially declared war on cancer and it’s still ongoing.
We’ve got a lot of work left to do.

I’ve seen the creation of lung cancer support groups, lung cancer centers, and lung cancer events. I’ve seen the development of targeted therapy drugs like Irressa and Tarceva and Xalkori save the lives of stage IV patients. I’ve seen the implementation of the National Lung Cancer Screening Trial. I’ve watched invasive procedures become less invasive and impossible tumors annihilated by cyber knife and targeted radiotherapy. I’ve seen some changes in perception and more education and awareness about lung cancer develop and I’ve been blessed to be a miniscule part of it. I’ve seen public recognition of lung cancer and LUNGevity. Progress!

I’ve also witnessed the passing of many people to this disease because they ran out of treatment options and time. I’ve seen more people under the age of 50 diagnosed with lung cancer who have never smoked. The NLCST wouldn’t have helped them because they don’t qualify. They are too young and without risk factors. Symptoms of lung cancer appear only in later stages. There is still no early detection test for lung cancer.
We’ve got a lot of work left to do.

1 in 14 people will be diagnosed with this disease that took my father’s life. That “1” person is someone’s child, father, mother, brother, sister, relative, co-worker or friend. That “1” person may feel afraid, isolated or alone like my father did 10 years ago.

There is hope today within a community of support for people affected by lung cancer.

There is hope for the future with LUNGevity’s focused dedication to fund critical lung cancer research.

That’s a lot of hope to keep me going.
After all, we still have work to do!

I wanted to take some time today to write about volunteering.

From my experience and purposes at times I talk about volunteering in the lung cancer community and supporting those affected by the disease, but these tips are pretty universal.

1) Decide what it is you like to do.

This one is a no brainer. Someone who isn't handy with tools won't be the best candidate to help rebuild homes. Someone who can't speak Spanish, won't be the best choice to help in an ESL class in Texas. So think about what it is you like to do and realistically what it is that you can do.

With LUNGevity we have several volunteer opportunities. You can offer peer-to-peer support, you can volunteer your business skills, you can volunteer for a LUNGevity event in your area, you can become a LUNGevity advocate and help raise awareness and spread the word. That's a lot of different ways to volunteer.

2) Find your personal connection.

A personal connection to a cause is why most people volunteer their time, money and efforts. For us, our volunteers are lung cancer fighters, survivors, caregivers, families, friends and co-workers. Everyone has been affected directly or indirectly and feel the need to do more to make a difference. By finding a cause that you have a personal connection to you'll feel rewarded by putting your efforts into that cause.

3) Find satisfaction in what you are doing.

Someone who hates asking for donations or raising money for a cause will probably not be very successful or satisfied in that position. Are you a people person? Do you like engaging others? Can you make a great elevator pitch and are you a salesman at heart? Then volunteering in development, finance, and events will be right up your alley. Every dollar raised is a personal goal and is personally satisfactory to you.

Not a salesman at heart? Maybe you're an event coordinator, someone who can organize a meeting or rally or support group? Every successful event is a personal win for you.

Are you more emotionally oriented? Then you would be the perfect support buddy for someone else in need of mentor ship, guidance and support. You may feel satisfaction bringing support materials and items to a support center or hospital. Helping others thru difficult times is personally rewarding to you.

4) Know when enough is enough and know when to say no.

A pitfall that some volunteers fall into is over extending themselves. They have the best of intentions, volunteer for a number of activities or responsibilities and for some, eventually their work, family and personal lives begin to suffer.
Volunteering may then begin to feel like a burden or a heavy responsibility that they want to be rid of. We don't want you to feel that way.

This may become a problem for the organization you're volunteering for too.
When a volunteer signs on to do something, those in the organization depend on them to carry out their commitments. We place those responsibilities in the volunteers' hands and turn our energies to something else believing that the tasks will be completed. If the volunteer over extends themselves and fails to complete their volunteer hours or tasks, the organization and those they serve suffers. Organizations that offer patient and family support also depend on volunteers. When they don't follow through, the patient and their family suffers. And it's a poor reflection on the organization.

Know your limits. Know when to say no and do it from the beginning. This is key advice for the volunteer and helpful to the organization. We want your help but would rather have your help in bite size pieces than to have things not get done.

5) Lastly, don't be afraid to try.

Reach above your comfort zone and try your hand at helping others, delivering materials or raising awareness, join an event committee or participate in an event just to get your feet wet. Volunteer to share your experiences with someone else who is in need. Make calls, deliveries, or send cards or messages to brighten the day of a patient. Be an ear for someone who doesn't have a support system and who needs peer-to-peer support.

Volunteering can be tailored to suit your lifestyle and life skills and those that volunteer play a vital and priceless role.
There are so many ways in which you can enrich lives by volunteering-
including your own.