Heather's Hangout

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

Advocating with one voice against cancer June 12, 2017

HH_CapitolDCOVAC

Ready to make a difference!

I had an amazing experience last week. I had the privilege, honor and fun of representing LIVESTRONG at the One Voice Against Cancer (OVAC) lobby day in Washington, DC. I joined more than 100+ advocates from 35 states to have over 160 meetings with our legislative officials to ensure fighting cancer is a priority for our government.

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One Voice Against Cancer is a collaboration of national non-profits delivering a unified message on the need for increased cancer-related appropriations. OVAC has made great strides in getting Congress to increase funding for cancer research and prevention programs. But of course, the work is far from done. Not when one out of four deaths in the U.S. will be caused by cancer. I’ve been fortunate to advocate with several organizations in DC in the past. Last year, I attended OVAC with LIVESTRONG, refreshing my energy and drive to make a difference (read about last year’s experience!). So I was very excited to be selected to attend again.

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I have always been interested in politics and love advocating on behalf of others affected by this disease. I wouldn’t say that I feel an obligation as a bone cancer survivor, yet I feel so grateful and blessed to be alive that it fills me with a deep satisfaction and I truly thrive in the environment. It’s so empowering and rewarding as a cancer survivor to work with other advocates, our elected officials and their staffs to make cancer research, prevention, programs and healthcare a priority. I have always believed that it take one person to make a positive change and I’m giddy when I think of the tremendous outcomes possible when all of us work together for positive change.

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Our asks to our legislators included (check out the full details):

  • Support $36.2 billion for the National Institutes of Health
  • Support $6 billion to the National Cancer Institute
  • Support $514 million for the Centers for Disease and Control cancer prevention programs

Two other women from Michigan attended OVAC so we teamed up to attend five meetings with our various senators and Congressmen. All our legislators agreed that funding for cancer research and prevention is critical and also agreed that any slowing or cutting of funds would mean death for too many people. We know this budget process is going to be….challenging, to say the least, so we, of course, will continue to follow with the offices to ensure our representatives stay committed to helping millions of people.

This trip was also a bit poignant for me….last Thursday was 20 years since I started

OVAC_MIstats

Millions of reasons to advocate.

chemotherapy for bone cancer. I can vividly recall being at the hospital, port inserted in my chest and IV drip starting, waiting for the throwing up to begin and my hair to fall out (throwing up started four days later, my hair fell out six days later). To be in DC, almost exactly 20 years later, advocating for other cancer survivors and representing those no longer with us truly felt like a beautiful full circle.

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One of my favorite pieces of this experience is, of course, the people who also attend as staff and advocates. We all come with our individual stories, whether we’re cancer survivors, caregivers, family members, friends of someone facing the disease. Yet we immediately have this common bond of cancer touching our lives, bringing us together in the fight. Each person’s story weaves into my heart and stays with me as I walk into legislative meetings and after I return home. Many of these people have become good friends, creating those bonds you know will travel long into your life. In these people, I actually smile at cancer because through the tears, sadness, anxiety and stress that cancer causes, I think of these friends and feel joy and laughter. Cancer causes such chaos and the people I meet are the beauty, the anchors to the chaos.

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I was also honored to be asked to share my cancer story as our send-off speech. My cancer story can’t be shared without sharing my dad’s story, as our treatments and outcomes are forever intermingled. Both my dad and I are examples of the impact of cancer research and treatment. Not so many years before my diagnosis, amputation was a common treatment option. Thankfully, research, better treatment protocols and new technology led to advances in killing tumors and trying limb salvage so that my femur and part of my tibia were replaced with titanium rather than amputated.

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Sharing my family’s cancer stories

My dad wasn’t given a good prognosis when we received his multiple myeloma diagnosis. However, research and new treatment options kept us one step ahead of his cancer for six years, until there were no more new drugs to try. But I will forever be grateful for those six years with him, precious moments to create so many memories to hold in my heart and mind. I know that he is beside me every time I walk into an office to ask for support.

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These are a few reasons that I advocate for funding for cancer research and prevention. There are millions more…..more than 1.7 million Americans will hear “You have cancer” this year, and more than 15.5 million cancer survivors will learn to navigate their new normal. Families and friends will say good bye to an estimated 1,645 people a day. So, yes, my friends, there is a lot of motivation to get involved.

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Attending this year’s OVAC was another wonderful experience working to help others. I never tire of these experiences, for I am alive to celebrate another day. And I believe that each success we have ensures thousands of others will be alive to celebrate too.

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You can get involved helping others touched by cancer too. If you don’t want to attend meetings or go to DC, that’s ok. We need people to send emails, make phone calls, use social media and do many other things too. Check out LIVESTRONG’s advocacy efforts, and the American Cancer Society Cancer Action Network also does a lot of work on state and federal issues.

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Honored to be a LIVESTRONG Leader January 6, 2017

hh_livestronghqThe best year ever is kicking off on a good note! I am honored, excited and proud to share that I was chosen to serve as a LIVESTRONG Leader in the new year. Leaders are volunteers from around the world who help strengthen LIVESTRONG’s mission, messages, and programs and services in local communities (and online).

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I’m excited to focus on some grassroots efforts to raise awareness of the great programs and services that LIVESTRONG offers to people touched by cancer. You might ask why LIVESTRONG? There are thousands of nonprofits dedicated to some sort of cancer cause, and I’ve been involved with many over the years. LIVESTRONG is an organization that I’ve been involved with on some level for many years because I truly believe in what they do for people affected by cancer. I think one of their greatest strengths is the ability to make a difference on the grassroots, local level. LIVESTRONG helps build a community by getting the people directly affected by cancer involved in the programs and services, through sharing program information and their own stories, raising funds to support these programs, meeting with elected officials to advance patient care, and so much more. Not just cancer survivors – caregivers, health professionals, family, friends, community professionals and more. People passionate about fighting cancer, interested in helping others and making a difference, talented, kind and compassionate. These qualities and so many more are what make up the people involved with LIVESTRONG. I love being in the presence of these people. A major reason I’m honored to be a volunteer for this organization.

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A few of my favorite LIVESTRONG programs include:

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LIVESTRONG at School: This program, designed for grades K-12, provides educators the tools and resources needed to have conversations about cancer in an age-appropriate manner. According to the National Cancer Institute, 25 percent of cancer survivors in the United States have at least one school-aged child at home.I also love that my younger sister jumped on this program idea when I shared it with her (she’s a former high school teacher and mom of three young children) so we’re already developing plans to pitch to our local schools!

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Advocacy/public policy work: LIVESTRONG works hard to ensure that cancer care remains at the forefront of the legislative agendas and is a national priority. I love working in this area of cancer advocacy, not just with my fellow cancer survivors and supporters, but also our elected officials and their staffs. I had the honor of being a LIVESTRONG advocate at last year’s One Voice Against Cancer lobby day in Washington, DC.This type of volunteer work is admittedly a bit of a rush and excitement for me. I just love it, especially the highs, and even the lows.

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Guidebook and journal: When I was asked to help edit the first edition of these books, I happily put my professional (and cancer perspective) skills to work. I then cried when I finished….because I was so happy these resources, packed full of valuable information, were available to people with cancer (these weren’t completed until after I finished cancer treatment). It’s a great way to navigate and organize your cancer journey. I always direct newly diagnosed cancer patients to these books.

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LIVESTRONG Fertility: Thousands of people are diagnosed with cancer during their reproductive years. Facing the possibility that cancer can take away your ability to have children adds stress to an already stressful time (facing it years post-treatment is equally stressful). This program provides reproductive information, access to discounted fertility preservation services and free medications, and more.

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Navigation services: These services provide free, personalized support and information for people affected by cancer, at any stage of the cancer journey. There is wealth of knowledge and support offered through these services.

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“Unity is strength. Knowledge is power. Attitude is everything. This is LIVESTRONG.”

People sometimes ask me why I devote so much time and energy to volunteering for cancer-related organizations, wondering if it doesn’t get to be too much since I’m a survivor and lost my dad to cancer. My response is always why not? I’m alive, blessed to be healthy, and able to give back. But I honestly don’t feel it as an obligation because I survived cancer (although I do feel that ALL people have some obligation to help others when you can; simple kindness goes so far.). I feel it’s simply part of who I am – I enjoy helping others.

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If you or someone you know is going through cancer or a caregiver, supporter or health professional, visit www.livestrong.org for information and assistance.

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***GREAT NEWS! If you’re in the metro Detroit area and interested in supporting LIVESTRONG, join me on Saturday, Feb. 18 at 11:45am for a “Rock Your Ride” event at Cyclebar Troy benefiting LIVESTRONG. It will be a fun cycling class with great music and giveaways – ride at your own pace and no experience necessary! 🙂 Click here to register.

 

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

Filed under: Cancer Tips,Life Lessons — Heather @ 10:00 am
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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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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.

 

Pandas & cancer advocates in our nation’s capital November 11, 2011

Filed under: Life Lessons,Random Travels & Exploring — Heather @ 1:38 pm
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Last week I had the pleasure of visiting our nation’s capital to attend a conference for the cancer support community I lead. I always enjoy the annual conferences as it’s a wonderful opportunity to interact with more than 100 fellow cancer advocates and colleagues

A beautiful fall day to visit the Capitol

(affiliate representatives come from all over North America). We usually have several educational workshops to attend, one or two festive evening events to relax at and time to just catch up, share best practices and get to know each other.  There is great energy that flows through the conference as we see statistics and facts on the positive impact our organizations make on the lives of people touched by cancer.

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This year was even more fun for me because we added an advocacy component. I was asked early in the year to work with the HQ staff to begin developing a policy and advocacy section of our strategic plan. Those of you that know me know I love politics, love advocacy and more fitting, love cancer advocacy. Our first goal was to take advantage of the conference being held in Washington, DC (it’s held there every other year) and get our affiliates to visit their legislators. So we developed messages, prepped the affiliates and made appointments with our elected officials.

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So proud to be an American woman with the right to vote!

I had recently given a tour of our facility to some of our representatives so only reached out to Senators Stabenow and Levin. Disappointingly I only heard back from Senator Stabenow, who was actually busy that day so I scheduled time for our program director and me to meet with her staff. It turned out to be a good meeting with her staff person, whose mother is a cancer survivor living in Michigan. She was interested in our legislative messages and I was pleased to hear that Senator Stabenow supports issues important to us (no cuts to Medicare/Medicaid and reject limits on charitable deductions currently proposed).

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While we had little free time this trip, I was still able to check some sights out. Our visit to the Senate office building was on a beautiful, sunny fall day. The Capitol was amazing set amongst trees with bright-colored leaves.

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The conference was held at the Marriott Wardman Park hotel, which is a short cab ride from the monuments and White House. It’s one of the biggest hotels in DC, which was evident by the fact that there were three conferences occurring at the same time! I was impressed with the staff because every time I paused to figure out where I needed to head, someone materialized and pointed me in the right direction.

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The hotel is short walk on Connecticut to the Smithsonian National Zoo. It’s a great zoo…and it’s free (and happens to have a Starbucks across from the entrance – double bonus)! The zoo claims to have 2,000 individual animals from 400 different species. That’s a lot! The

Giant panda at the Smithsonian Zoo

gates open at 8:30am every day except Christmas so I took the opportunity to walk there one morning. One of my favorite areas is the panda habitat. They’re so darn cute and cuddly looking! Giant pandas typically live in central China and are on the endangered species list since there are less than 1,600 in the wild and around 300 living in zoos and breeding programs. The National Zoo has two pandas “on loan” until 2015 from the China Wildlife Conservation Association. The pandas, Tian Tian and Mei Xiang, are part of a breeding program to protect and preserve this species.

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The Cheetah Conservation Center was cool too. There are three males and one female living permanently at the zoo. These animals are also on the endangered species list and part of a breeding program.

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I hope to go back to Washington, DC soon for a relaxed, personal visit (rather than work) so I can spend more time at the monuments, wander the zoo a bit longer and maybe even have dinner at the White House (ha, I can have goals!).  There is something about being in our nation’s capitol that makes me motivated, inspired and like I can accomplish anything. Perhaps because big decisions are made here (and sometimes not so big and smart are made too). Perhaps because the times I’ve been here, I’m surrounded by fellow cancer advocates. Perhaps because I love our nation’s history and there is so much history in Washington, DC. Maybe it’s all these reasons and more.

 

 
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