Heather's Hangout

Sharing the people, places & little moments that make a difference.

Getting involved in cancer advocacy August 8, 2017

ACS HOPE lobby day

Hope makes everything worth fighting for. (ACS CAN Lights of Hope ceremony in DC)

After spending a week biking across Iowa with Team LIVESTRONG, raising funds and awareness for their programs and services for people facing cancer, I’m even more ready to work to improve healthcare, increase funding for cancer research and better treatment options, and support people affected by this crappy disease. And the sad thing about this disease’s impact is that there is much more to do. More than 1.7 million people will be diagnosed with cancer this year. It’s estimated more than 600,000 Americans will die from the disease. Too many. Unacceptable.

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I’m honored to recently be ‘promoted’ in my volunteer role with the American Cancer Society Cancer Action Network to the team lead for my Congressional District. This means that I will be working more closely with our local, state and federal elected officials and their staff. To me, it means that I can help make a more positive difference in the lives of people facing cancer. I’ve enjoyed meeting with the local staff in our district and speaking about ACS CAN at local events. Healthcare is ever-changing today and there never seems to be an end to the work!

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I’m really excited that I will be joining ACS CAN in Washington, DC in September. Hundreds of advocates will come together to meet with our home state federal officials to ensure cancer research, funding, preventive programs and more remain priorities for Congress. The highlight of the trip will be the Lights of Hope ceremony on the steps of the Lincoln Memorial. Here, more than 24,000 luminary bags will be lit to spell HOPE, a truly symbolic moment in our fight against cancer. Hope is something that I hold deep in my heart for every aspect of life. The luminary bags represent thousands of the cancer survivors and those we lost to cancer (Each bag is only $10. If you’d like to purchase a bag in honor or memory of someone special touched by cancer, click here.).

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There are many ways for you to get involved in cancer advocacy. It’s as easy as advocating from your home if you want! Sending emails, posting to social media, writing letters to the editors and calling your representatives is easy and makes an important impact. If you think your voice doesn’t make a difference, think otherwise. ACS CAN advocates had the following impact on Congress’ attempts to repeal the Affordable Care Act without a reasonable replacement (since Jan. 2017):

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–128,000 petition signatures/messages sent to members of Congress
–20,000 new ACS CAN member volunteers registered
–The #keepuscovered hashtag was used 16,000 times on social media (mostly Twitter), earning a reach of more than 42 million.
–30,000 calls were made to Hill offices (since February)

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That’s quite an impact volunteers made on important issues! I encourage you to get involved in making a difference in the fight for better healthcare for everyone. Here are some organizations that are active in cancer advocacy and that I have experience with:

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American Cancer Society Cancer Action Network. I believe that ACS CAN is one of the leading organizations advocating on behalf of people touched by cancer. Their influence is far-reaching and makes a positive impact (read the few stats above). There are many opportunities to work for positive change in your state by becoming an ambassador member.

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LIVESTRONG. Many of the national cancer priorities are also priorities for LIVESTRONG’s advocacy work. Pushing for an increase in cancer research funding and stopping the repeal of the Affordable Care Act are recent actions. I attended the One Voice Against Cancer lobby day the past two years with LIVESTRONG, which was an amazing experience, and made a difference in cancer care.

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National Coalition for Cancer Survivorship. NCCS works to improve quality of care and quality of life for anyone diagnosed with cancer. The organization advocates for better cancer care, improved research on new treatment options, and self-advocacy.

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Cancer Support Community. This organization formed years ago when The Wellness Community and Gilda’s Club merged. CSC offers social and emotional support for people facing cancer, caregivers and more. The policy work of CSC often focuses on ensuring that emotional support is an essential part of treatment for the patient, family members and caregivers.

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Cancer specific organizations. There are a lot of advocacy groups focused on specific cancer. For instance, I follow news from the Sarcoma Foundation of America as it focuses on bone cancers and get involved when needed. This organization works to advocate for increased funding for sarcoma-related research and treatments, as well as educate patients and the public on sarcoma. As a bone cancer survivor, these issues are obviously near and dear to my heart.

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All of these organizations distribute electronic updates and advocacy alerts. At the very least, I encourage you to register to get informed on what’s happening in policy related to cancer. Positive change begins with one person. You can be that person!

 

Exploring our nation’s capitol June 14, 2017

washingtonmonumentLast week, I was in Washington DC for the One Voice Against Cancer lobby day to meet with my legislators regarding funding for cancer research and prevention programs. I was honored to be selected by LIVESTRONG to attend this event with more than 100 other advocates from across the nation.

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The experience was awesome and my meetings were positive and hopeful (read about the experience). And I do love being in Washington, DC. I love the history of our nation, watching American and foreign tourists learn about and remember the past (hoping not to repeat some of it). I love the excitement and energy that drifts through the town. I love exploring the different neighborhoods and cultures. I love meeting with our legislators and their staff to work together to change the tide for people touched by cancer.

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After a whirlwind of meetings, I decided to stay an extra day for a bit of sightseeing and fun. It was a bright, sunny, cool day in DC. After breakfast at Bob & Edith’s Diner, we started our exploration by heading toward the National Mall.

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No matter how many times I visit Washington, DC, I love touring the national monuments, museums and memorials. I’m always a little in awe of how large these monuments are….large and impressive in their architecture, construction and meaning. I get reflective, motivated, and emotional thinking of the situations that stirred such thoughts and speeches from these historical figures. So many of the quotes are as meaningful and relevant to the world today as they were when spoken decades ago. I would love to know that our current elected officials walk through these memorials at least once a year, but alas, I truly wonder how many of them have never visited. I think it would be a good reminder of the honor, and major responsibility, of representing the American people.

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The Washington Monument greeted us, standing tall with blue skies above and American flags surrounding it. We walked around toward Thomas Jefferson’s Memorial, overlooking a tidal basin from the Potomac River. People relaxed on the steps, enjoying the breeze, while others were on paddle boats and kayaks in the basin. We then walked to the Franklin D. Roosevelt Memorial, which leads you through the historic years of his terms. FDR’s memorial leads to inspiring and memorable quotes from Martin Luther King, Jr and a large statue of the man.

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It never fails that I get emotional walking through the Korean War Memorial, with the statues of soldiers ‘walking’ through the greenery and the images of men and women engraved on the wall. I can’t help but touch these images, wondering who they represent, who came home, who didn’t. No matter how many times I walk through the memorial, tears always fill my eyes and my heart beats in gratitude for all those who served to protect us and also sadness for those lost. The emotions continue through the Lincoln Memorial, Vietnam Memorial, and World War II Memorial. This is one of my favorites as I love standing near the center, looking around at the wreaths representing every state, knowing all of these make up our great country. As we wandered through the memorials, veterans of all ages from many of our wars also toured each memorial. I can’t begin to imagine their thoughts or memories. I can only be grateful for their service and sacrifices.

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Mainelobsterroll_beerWe stopped at Luke’s Lobster in Penn Quarter for lunch where I enjoyed my first Maine lobsterroll and poppyseed coleslaw, along with my first Allagash craft beer from Maine. It was all delicious!

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I really enjoyed wandering Dupont Circle. I liked the small businesses, homes, ambiance of the neighborhoods. It was busy and hip, yet still resembled a quiet, historic neighborhood. We discovered two neat record stores, filled with albums that brought back many fond memories of listening to great music with my parents. We enjoyed drinks and deviled eggs on the outside back deck at Exiles Bar. They were smoking some great smelling meat. We unfortunately made a quick exit when a woman lit a cigarette near us and we realized the outdoor deck is also a smoking area (so glad that Michigan doesn’t allow smoking outside when food is also served).

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We took the Metro (underground subway system) back to Crystal City where OVAC lobby day was hosted at the Marriott. It was fun riding the Metro many times while in DC. It gets so busy at certain times of the day (especially work day mornings!). Michigan does not have good public transportation, certainly nothing like the Metro, and I wish we did. I finally felt like I was getting the Metro down by the time I had to head home….well, okay, I sort of felt like I was getting the Metro down! I might have gotten on one (or two) wrong trains had my friend not nicely asked where I was going (when everyone else was headed the other way). Well, I would have figured it out eventually. And if nothing else, there’s adventure in exploring the places you didn’t plan on visiting!

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We ended the trip with final drinks at Highline (above McCormick’s & Schmick), which has a great open bar with live acoustic music and plenty of space to relax and socialize. I can picture many fun happy hours occurring in this space.

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It was a great day of exploring new areas and stepping into the past for reminders of all we’ve been through as a country. And just like I’m confident in our ability to make great strides in our fight against cancer, I’m also confident in our ability as citizens to find our way back to a country of kindness, good leadership and smart decisions that help many, not just a special few.

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One of my favorite quotes from Martin Luther King, Jr.

 

Why we need one voice against cancer March 16, 2017

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Meeting with Sen. Gary Peters to discuss cancer care.

Unless you don’t own a television, aren’t on social media (or the Internet) or perhaps live under a rock, chances are that you’re aware of the hot topic of health care. As a cancer survivor, it’s a topic dear to my heart as I’m most likely affected, as well as more than 16 million other survivors, by any changes to the current law. And that’s just cancer survivors. Add in millions of others affected by different pre-existing condition circumstances and health issues, seniors, and others, and, well, it’s a major topic. Many people are turning their heads because they don’t like politics. But this topic isn’t about politics. It’s about taking care of people.

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Politics has been a bit of an interest for me since I was young. I loved my high school government class, was elected to our student senate and even got to serve as mayor of my hometown for a day! In college, my interests waffled between being a travel writer, communications director/press secretary for a politician or lobbying firm, or running for office myself. When I was diagnosed with bone cancer my senior year in college, my interests turned to healthcare and cancer advocacy, whether as a career or volunteer efforts.

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Last year, I had the great opportunity to attend the One Voice Against Cancer Lobby Day in Washington, DC as a LIVESTRONG advocate (read about that awesome experience here). I’m honored, flattered and thrilled to share that I will again attend OVAC in June with representatives from many organizations, including LIVESTRONG, American Cancer Society Cancer Action Network, Susan G. Koman, Sarcoma Foundation of America and many others. I’m excited to be able to meet with my congressional representatives and their staff to discuss cancer and healthcare issues. It’s critical to keep cancer as a healthcare priority, ensuring coverage for people with cancer and funding for screenings, research, treatment advances, survivorship care and more. I’m also excited to once again come together with the other advocates who are passionate, kind, intelligent and dedicated people. I am a better person when I leave these gatherings, having engaged with such inspiring people.

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I’m always a little fascinated when people ask why I volunteer so much and wonder how I

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Research gave us extra special time with this guy.

can enjoy advocating on tough issues. Sure, I admit it can be mentally and emotionally draining at times. Not everyone I meet has a happy ending, not all issue outcomes swing the way we want. But I am never alone, for great people stand beside me all the time. And I believe we can make a greater difference if we work together for change. It takes one person to make a difference in someone’s life, and one person to make a change and start a movement that could positively impact someone. I’m alive and able so figure why shouldn’t I be that one person?

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I became even more determined to be a voice for cancer survivors when my dad was diagnosed and then died from the disease. Once during my cancer treatment, I rested on the couch as my dad sat beside me, holding my hand. Then he said he prayed every day that he could take my cancer from me. I got so mad at him for that and made him promise, even pinky-swear, that he would never do that again. As much as cancer sucked and unnerved me, I would never want anyone to take that burden. Less than three months after that conversation, I was told my tests were coming back cancer-free. And my dad was diagnosed with late stage multiple myeloma. It devastated me. And deep down, survivor’s guilt bloomed. Yes, I know my dad didn’t have the power to magically take my cancer, yet that doesn’t stop those moments from being laser-cut into my brain and replaying every so often. It was another motivation to become active in cancer advocacy and policy. Because if he could be willing to stand up for me, then I could certainly continue his fight, my family’s fight, and stand up for others touched by this terrible disease.

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I recognized years ago, as a young adult cancer patient facing many serious issues and decisions, that I had the chance to live beyond my cancer and save my leg, because someone else once had the courage to stand up for others. A researcher had the opportunity to develop new cancer drugs. Surgeons had the ideas to test cadaver bones, then titanium rods to try to prevent amputations. My dad was told he had maybe three moths time when he was first diagnosed. Thanks to a wonderful oncology team, his stubbornness and zest for life, and new treatments and drugs, he lived six years. My family had more time with my dad because someone else stood up in the past to push for change. I am committed to pushing for more research for cancer drugs and treatment so another daughter can get more time with her dad. I realized so many years ago that I wanted to be one of the people who held tight to the baton as it was passed and help make a difference in others’ lives.

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USCapitol

Love visiting DC!

Consider these healthcare facts:

  • More than 16 million people are cancer survivors in the United States. It’s expected to increase to more than 20 million by 2026.
  • Cancer is the second most common cause of death in the U.S., exceeded only by heart disease. This means 1 of every 4 deaths is from cancer.
  • It is estimated that 41 out of 100 American men and 38 out of 100 American women will develop cancer during their lifetime.
  • More than 52 million Americans had a pre-existing condition in 2015, meaning they would be at risk in obtaining health insurance coverage without this protection in the healthcare bill.
  • More than 1.7 million new cancer cases are expected to occur and approximately 600,000 cancer deaths are projected in 2017.
  • 117 million Americans have a chronic condition.
  • Preventive health screenings have helped lower rates of certain cancers, including colon, rectal, cervical and breast.
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When I read this facts, I know that our work isn’t done. Far from it. We’ve made great advances in treatment and survival rates, but when people are still being diagnosed and dying from the disease, then we keep working. These people need health insurance, access to care and preventive screenings. I encourage you to get involved….call your representative to share your thoughts on the proposed new healthcare bill, more funding for health screenings, access to care and whatever else is important to you. Let’s work together to make a difference.

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Need more tips for being an advocate for others? Read my previous blog post.

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Interested in becoming a cancer advocate? Check out LIVESTRONG and the American Cancer Society Cancer Advocate Network.

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Sources: American Cancer Society, Kaiser Family Foundation, Centers for Disease Control & Prevention, National Cancer Institute. US Capitol: © Joegough | Dreamstime.com

 

One Voice Against Cancer lobby day in DC May 15, 2016

Filed under: Cancer Tips,Life Lessons — Heather @ 10:00 am
Tags: , , , , ,
SenStabenow_HH 2016

Talking with Michigan’s Sen. Stabenow

I am on a high. No, I haven’t started taking drugs. I feel high on life, motivation, passion, community. I had an amazing experience earlier this week. Maybe life-changing. Certainly empowering and inspiring.

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I was so very honored to be chosen by the LIVESTRONG Foundation to be one of 34 volunteers representing the organization at the annual One Voice Against Cancer lobby day this past Monday and Tuesday in Washington, DC. OVAC is a national coalition of cancer-related organizations that brings a common, united message to our elected officials on the need for increased cancer-related appropriations. Overall, there were almost 100 volunteers representing 36 states and holding 154 meetings with legislative officials. We were there to make a difference.

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Our goal was to secure commitments from our elected representatives to support more funding for cancer-related programs and research. I met with Michigan’s two U.S. senators and staff from the two representatives’ offices to ask for commitments in increasing funding for the National Institutes of Health, National Cancer Institute, the Cancer Moonshot Initiative, and the CDC cancer programs. While we’ve made progress in the past, too many budget cuts have impacted research, preventative screening programs and more (for example, the NIH budget is nearly 18 percent below the FY2003 level). We need to strengthen our fight on this disease.

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Consider these facts that merely scratch the surface as to the need for more funding for research, education and prevention:

  • In 2016, there will be an estimated 1.7 million new cancer cases.
  • 595,690 estimated people will die this year due to cancer. Basically, one out of four deaths will be from cancer.
  • In my home state of Michigan, there will be an estimated 56,500 people diagnosed with cancer this year. About 21,000 people will die in the state due to cancer.
  • Cancer’s economic impact is staggering – more than $216 billion annually will be spent in direct treatment and lost productivity.
  • There are more than 14.5 million cancer survivors in the U.S. (YES!) Survivorship programs, including those funded by the CDC, help address short- and long-term side effects and education needs.
  • The cancer death rate dropped 23% from 1991 to 2012. Americans are living longer post-treatment.
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SenPeters_HH 2016

Meeting with Michigan’s Sen. Peters

From the time I was diagnosed, I tried to make a difference as a cancer advocate. At first, I felt a bit obligated to give back whenever and wherever I could – I am blessed to be a survivor when so many others are not, including my dear father who died from multiple myeloma But I always remember my dad’s words to me shortly before he died – he  told me that he would forever believe in my ability to make a difference in the world, whether by helping one person at a time or leading a movement of change. He also reminded me to first enjoy my life because I deserved it. So I let go of that obligation, because I truly enjoy helping others and being involved in the cancer movement. It is inspiring, powerful and motivating. The statistics of those touched by cancer are startling and unacceptable. But the people you meet, befriend, and stand beside are worth every effort you give.

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As for the people I was with…..it was an honor to be among them. We all have the common story of being touched by cancer, whether by our own diagnosis, someone else or both. We came together for a common cause, bonded by that and our desire to see positive change for others.  As one friend put it – these people are ‘part of my tribe’ and provide an instant comfort, understanding and welcome. We have personally overcome adversity and challenges, yet stand strong to help others who don’t have a voice. And there are those special people in life who offer a rare almost instant connection, who ‘get you’ and have a way of making you smile and laugh at life. I was fortunate to meet some of those people who left a positive mark on my heart. I feel blessed for that honor.

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And I love being in Washington, DC. There is a certain pride and love that fills me when I stand in front of our Capitol, Justice building and White House. As dirty and annoying as politics can be, there is much positive change that occurs in the buildings throughout DC. As I stood in front of the Capitol, I overheard someone say, “As citizens of the United States, it’s our home, no matter what state you reside in.” I thought that was a cool perspective.

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This experience was almost too much for words, thus the delay in sharing it with all of you. Every time I sat down to type it out, I couldn’t express what I’m feeling. I’m still not sure I have captured it. Hopefully, you get it. Maybe you have your own tribe who ‘gets you’ and you have your own cause that fuels the passion and motivation in you.

 

 
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