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.


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!


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.).


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):


–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)


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:


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.


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.


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.


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.


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.


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!


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