Lynch Syndrome, Facebook, and Washington DC

In no way could I have ever imagined that 3.5 years after Mike was diagnosed with colon cancer I would be heading to Washington DC with a group of nearly 40 other people from around the country.  None of whom I would have ever met if it weren't for Facebook.

Following Mike's diagnosis of Lynch Syndrome, I spent countless hours online searching for information.  At some point a Google search brought me to Colontown.  Little did I know that one click of "Like" on a Facebook page would provide so much information and support.  In "Lynchville", a neighborhood of Colontown I found other people living with Lynch Syndrome either personally or because someone they care about has it.  Some had been through an unbelievably difficult time and came out swinging and ready to fight - in a positive way.  Regardless of the journey, the overwehlming "vibe" is one of support, compassion, humor, honesty and love.  It was easy to feel at home.  

Meeting people online is obviously not the same as in person, but you still build relationships.  Close relationships.  Many of the people I will never meet.  Others I met at the Lynch Syndrome conference in Minneapolis in September.  This week I will meet many others as we invade Washington DC to advocate for medical imaging and radiation therapy services.  Seeing so many people I already feel a connection with who all share a desire to make a difference is huge!

With Veteran's Day yesterday and flying to our Nation's capitol today I have an overwhelming sense of gratitude to those who have fought so that we have opportunities like this.  We live in a country where we are encouraged to meet with Congress and tell our stories.  For policy makers to hear first hand from those who's very lives (or the lives of loved ones) depend on getting the right scan at the right time.  Affordably. 

Obviously, our government is not perfect. After all, it's run by human beings and Lord knows none of us are perfect.  But, will our group make a difference?  Absolutely.  Will we know what kind of difference we are making?  Maybe.  Will I be changed by this experience?  I'm counting on it. 

My Daughter

One of the reasons I want to do all I can to keep my family safe and healthy.

Dear Zoey,

How is it possible that you are 8 years old! For 8 years I have watched you grow from a helpless baby who relied on me for everything, to a toddler who didn’t know the meaning of the word “can’t”. As far as you were concerned nothing was going to stop you or even slow you down. The fact that you might be too young or too small never occurred to you.

I still see so much of that in you and I hope you always remember you are capable of amazing things. I also see more uncertainty in you as you spend less time at home and more with friends, activities and school. So many things out there that can make you question yourself. Don’t ever forget who you are. You are smart, strong, thoughtful, compassionate, beautiful and funny. People want to be around you because of who you are and how they feel when they are with you. You feel things strongly, which in turn means your feelings are more likely to be hurt. Don’t let that stop you from being the kind and generous girl you are.

I promise to be honest with you, even if what I have to say makes you angry with me.
I promise to learn from you. After all, I make mistakes too.
I promise to do whatever I can to help you follow your dreams.

I promise to love you always and forever, no matter what.

Mom

Right Scan Right Time

How Cool is this!!!

FOR IMMEDIATE RELEASE

November 05, 2013

Dodgeville Resident TRAVELS TO WASHINGTON, D.C. TO CALL ON CONGRESS

TO PROTECT ACCESS TO MEDICAL IMAGING AND RADIATION THERAPY

Dodgeville, WI – Next week, Heather Dampf, a resident from Dodgeville will join more than 50 fellow patient advocates from across the country in Washington, D.C. to call on Members of Congress to protect patient access to life-saving medical imaging and radiation therapy services.  

“As the spouse of someone who has survived colon cancer and lives with Lynch Syndrome, I know first-hand how important it is for patients to have access to the right scan at the right time,” said Heather. “I want to make sure Congress does not forget the critical role medical imaging and radiation therapy plays in early diagnosis and treatment of countless diseases.”

Upon arriving in D.C., advocates will attend an Advocacy Academy to familiarize themselves with one another and the messages they will be delivering to their Members of Congress. The following day, advocates will go to Capitol Hill to deliver those messages, urging policymakers to reject misguided, harmful policies that would threaten patient access and undercut the benefits of early detection. Advocates are hopeful that, in hearing real-life patient experiences in person, policymakers will be moved into action to protect patient access to medical imaging and radiation therapy technologies.

In these meetings, advocates will stress the importance of Congress rejecting recurring cuts to Medicare reimbursement for medical imaging and radiation therapy services, which have been slashed thirteen times since 2006. They will also urge Members of Congress to hold the Centers for Medicare & Medicaid Services (CMS) accountable for ensuring high-risk or symptomatic beneficiaries have full access to important diagnostic tests. Finally, they will urge policymakers to reject the use of Radiology Benefits Managers (RBMs), which can delay or deny access to medical imaging services, in Medicare. 

Medical imaging has proven vital to detecting, diagnosing and treating cancers and other deadly diseases that touch millions of Americans. Researchers have found that at least 40 percent of the decline in cancer mortality is due to diagnostic imaging innovation.

The Capitol Hill Fly-In was convened by the Medical Imaging & Technology Alliance (MITA) through its patient advocacy and survivor network, Right Scan Right Time, in partnership with advocacy groups COLONTOWN, Chris4Life, Lung Cancer Alliance and YES! Beat Liver Tumors.

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 The Medical Imaging & Technology Alliance (MITA), a division of NEMA, is the collective voice of medical imaging equipment, radiation therapy and radiopharmaceutical manufacturers, innovators and product developers. It represents companies whose sales comprise more than 90 percent of the global market for medical imaging technology. For more information, visitwww.medicalimaging.org. Follow MITA on Twitter @MITAToday.