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Tuesday, December 31, 2013

2013: In the Rearview Mirror



Our Family

This was a great year.  On the home front, I began the home school process with eldest son Freddie.  Younger son Isaac continues to thrive in public school. He is now a proud 2nd grader.

We moved in June to Grantville, MD population 700.   This is the town my husband Fred called home throughout his childhood.  Often our older neighbors mistake my son Isaac for the child that was Fred.  Moving was a big change after living in DC for 16 years.  Grantsville is much calmer and a better home for my active sons.  Also, we now live in the same town as my in-laws and Fred’s grave is only blocks away. 

I now belong to the local Rotary Club and volunteer at the HighlandThrift Shop.  Isaac is in Cub Scouts and we are making new friends.  This area is awash with fundraising and good causes and I am honored to take part in such worthy endeavors.

Our Church

Our family joined Christ Lutheran Church in Grantsville this fall.  It is a lovely small Church with a dedicated congregation.   Pastor Ingrid and I went door-to-door twice inviting folks to our Church.  (I love people who are brave and go along with my evangelism ideas.  Pastor Ingrid is such a wonderful servant of the Lord and leader of our congregation.)   Two new families are now attending and have decided to be baptized in the faith.  I hope for them the joy I have felt walking with the Holy Spirit in my heart.

My Car

For the first time in my 41 years on this earth I have a driver’s license.   I took the driver’s test 4 times in the State of Maryland before I passed the test.  (I took it twice in Oklahoma in 1991, so that adds up to 6 times)  Some people in my life seem to think I am good at all I do.  This goes to show I am not. I just didn’t give up.  That is really important lesson in a life.



Thank you For the Opportunity to Speak

I look back on an amazing year filled with advocacy.  I spoke, painted and wrote about health in this nation and beyond its borders. I met so very many wonderful people and look forward to working with them again.

I had the honor to speak, paint, blog and tweet at so many wonderful places in 2013.  I thank all of the organizations and venues that gave me opportunity to spread the message of patient inclusion at the policy table and the importance of medical advocacy.  I especially thank Brenda Kane and her associates at the American Program Bureau for her diligent efforts to help me speak at ever more venues.

Thank you…

Saskatchewan Academic Health Sciences Network, Saskatoon, SK, Canada. 

4th Annual Workshop on Health IT and Economics (WHITE 2013) Washington,

“Patient at the Center of Clinical Trials.” Roundtable at Lilly, Indianapolis, Indiana

Midwest Care Alliance, Columbus, Ohio

MetaStar Event, Madison, Wisconsin

St. Joseph’s Hospital, Bangor, Maine

Planetree Annual Conference 2013, Montreal, Quebec, Canada

Annual Cerner Health Conference, Kansas City, Missouri

Health 2.0 San Francisco, California

Stanford Medicine X, Stanford, California

Southeastern Michigan Health Information Management Association Annual Meeting, Detroit, Michigan

2013 AHIMA Health Integrity Summit, Alexandria, Virginia

KUMC, Kansas City, Kansas

Grand Rounds Halifax Health, Daytona, Florida

Iowa Healthcare Collaborative (IHC), Altoona, Iowa

The 32nd Annual Colorado Health Symposium, Keystone, Colorado

Merge Live User Group Conference, Chicago, Illinois

Academy Health’s Innovation Station at ARM, Baltimore, Maryland

Mississippi Calling: Healthcare Symposium- ePatient Literacy, Jackson, Mississippi

Collaboration Across Borders, Vancouver, Canada

Walking Gallery III at St. Paul’s Lutheran Church and rededication of the mural 73 cents.

Genetic Alliance and Intermountain, Powerful Patient Data: Genomics and Family Health History in Health IT, Salt Lake City Utah

Kaiser Permanente Innovation Retreat, Denver, Colorado

California HIE Stakeholder Summit, Sacramento, California 

“The Role of Patient Engagement:  Diverse Perspectives from Our Panel of Experts” for The Children’s Hospital of Philadelphia’s, Center for Biomedical Informatics’ Annual Healthcare Informatics Symposium, Philadelphia, Pennsylvania

Medseek Conference, Austin, Texas  

Screening of 73 Cents and Q&A in Austin, Texas

NCAL HIMSS Chapter on Patient Engagement, Fairfield, California

ACMA (American Case Managers Association), San Diego, California

Genentech Meeting, San Francisco, California

HDX Conference, Boston, Massachusetts

Third Annual Crossing the Infrastructure & HITECH Meaningful Divide Symposium….”“The Patient and Technology:  Partners in Care,” King of Prussia, Pennsylvania

Maine Association for Healthcare Quality, Bangor Maine

Patient Safety Awareness Week, Calais, Maine

Our City Film Festival, Washington DC

Expectations: University Hospitals Case Medical Center has a Quality and Patient Safety Fair, Cleveland, Ohio

Artist onsite HIMSS Patient Experience with HIT, New Orleans, Louisiana

JHU/NHGRI Genetic Counseling Training Program at NIH, Rockville, MD

The Walking Gallery

We had a successful crowd fund earlier this year on Medstartr with the help of Cancer 101, raising $10,000.00 to pay for a mini documentary of the Walking Gallery.  The documentary is posted online and free to share.  Please share widely as it is a good way to explain the movement.  


The Walking Gallery of Healthcare from Eidolon Films on Vimeo.

The Walking Gallery now has 269 walkers who wear their jackets around the world.  There are 23 artists who have painted in the Gallery; seven new ones joined us in 2013.

We now number 300 jackets.  That is a mighty number.

The last jacket painted in 2013 is entitled “The Rolodex.”  I painted it for Cathy Collet who is better know as @ALSadvocacy on twitter.


As I was designing this jacket, Colton (our family friend and 4th grade pupil) asked what was the thing that I was painting.  I told him it was a Rolodex.  He asked, “What is a Rolodex?”  I smiled at this small digital native and explained before computers we kept our business contacts, friends and family’s information in these handy devices. 

As I explained the concept of a Rolodex, I thought of the many years that I would spend the quiet days between Christmas and New Year’ cleaning out old cards and making room for new ones.  I would pull card after card of sales reps who had moved away, friends whose Christmas cards came back “return to sender” and the cards of friends and family who had died. 

I looked at Colton and explained everyone in the Rolodex I was painting died as result of ALS.  He asked me what was ALS.  I explained it was a disease that made it hard to use your muscles.   First walking would be hard to do, then using your hands and then talking.   As the disease continued a patient would talk using their eyes, then finally they would not be able to breathe.  They would descend into the complete silence in the end.

Colton said, “That sounds like a hard way to die.”  I told him we could do something special for these people we lost.  We could tell their story.

I told Colton, “After Fred died I Googled him.  He had only two hits.  One was from the obituary in the paper and one was from American University where he worked.  Then I spent the last 4 years on medical advocacy and speaking about Fred.  Would you like to see how many hits Fred has now?”

Colton nodded yes and his eyes grew big as he looked at the result: Frederick Holliday II PhD had over 6 million hits. 

Online the names from a Rolodex live on.  We get to meet Cathy’s friends and family; Barbara Brenner, Betty Collet, Pat Dwyer, Ben Harris, Scott Curtis Johnson and Rob Tison.  We see them leave the dusty card and walk into an eternity of advocacy.

That is my 2013 in the review mirror.  The things we did, the people we met will create ripples in the years to come.  We will never really finish this time in our lives nor truly say goodbye to those we love; this time continues in our hearts and within our digital lives.






8 comments:

  1. Thank you so very much for your talented art work, and the way you honored my husband Pat, and all those who lived with ALS. I appreciate it so much.

    May your 2014 be successful, and full of many "hits."

    With my love and appreciation, Jenny

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    1. Thank you Jenny. I am so glad I have the opportunity to meet you and your Pat through our dear friend Cathy. It is my great hope that 2014 will be a year of great change within medicine.

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  2. So appreciate this round-up, Regina and especially that you've mentioned your church. As you know, I'm forever trying to get healthcare leaders to speak/write/tweet publicly about their faith.

    Over the years, many have told me via the back channel that they don't because it puts their jobs at risk. I get it. I really do and so I'm so grateful to those who *are* able to at least imply when, where, and how health and faith intersect. And there ain't nothing like chronic illness, disability, dying, and death to make those connections more obvious! (Insert gallows humor laugh here.)

    Anyhoo, glad you mentioned Christ Lutheran. Over the past few years of working ecumenically (encouraging church communities to use social media tools) I have been consistently delighted by the warmth and generosity of ELCA congregations and synods. I'm so glad you've found a church home in your new hometown.

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    1. Meredith, we really need to work more on public awareness of that intersection. So much more wonderful change could happen if we embrace the energy and inspiration of faith in the world of health care. I often talk about God in my speeches and some attendees have even taken me aside to explain that they believed it was not possible to talk about God within medical advocacy. I am glad I was able to change their mind :)

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  3. Great post and thank you for all you do! I also hope 2014 is a great hear of change. Thanks for being an inspiration and a tireless advocate.

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    1. Thank you Amy for all the work you do in this sacred cause.

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  4. What a wonderful box of memories. Keep on marching, grrlfren - and I gotta say that both Freddie and Isaac look GREAT. Happy, smiling ... good move, Mama.

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    1. Some days are really great days, and I am ever so thankful for those days.

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