Greetings Friends!
It's been a busy summer of patient advocacy and education work. In my travels, I spoke at Scleroderma Patient Education Day in Pennsylvania, participated on a panel at the Lupus National Policy Summit in Washington, DC, and just last week returned from a U.S. Department of Defense-Lupus Research Programmatic Panel meeting where I was not only chosen to participate, but also to deliver the Moment of Silence in honor of all those coping with lupus.
Advances being made in science and healthcare are giving patients like me a voice. It's September and change is in the air. For patients living with chronic illness, our time has come.
Hugs,
Cindy
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Advocacy at the Capitol |
Washington, DC
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Lupus National Policy Summit :
On June 26th and 27th lupus activists from around the country gathered on Capitol Hill for a two-day National Policy Summit: Advocacy in Action to raise awareness of the disease and advocate for increased funding for lupus research, education, and access to quality care. I was excited to have the opportunity to serve on The Promising Pipeline in Drug Development panel as a patient representative alongside leaders from the pharmaceutical industry as they shared the latest news about next treatments for lupus patients. You can watch the panel discussion in its entirety on the Lupus Foundation's Facebook video page.
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Drug Development for Lupus panel at the 2017 National Public Policy Summit in D.C.
Pictured above, members of the panel (left to right):
Rick Goulburn, Executive Vice President, Vifor Pharma (Panel Moderator);
Cindy Coney, Patient & Lupus Advocate;
Joan T. Merrill, MD, Member & Head, Clinical Pharmacology, Oklahoma Medical Research Foundation;
Robert Huizinga, Aurinia Pharmaceuticals;
Raj Punwaney, MD, MBA, GlaxoSmithKline (not shown,
Christian Stach, MD, UCB, Inc.)
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Featured Article|
Patient Voices
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"The human voice is the most perfect instrument of all."
-
Arvo Pärt, Co
mposer
Me rriam-Webster dictionary defines the adjective "patient" as, "not hasty, steadfast despite opposition." By nature, I do not believe that adjective describes me. Patience isn't a trait that runs strongly through my family; we are more the "get it done now" types. However, I do fall under the definition of "patient" as a noun-"a person under medical care or treatment"-as do millions of other Americans.
Yes, at one time or another most people will be a patient under medical care. For some lucky people that noun is applied short-term. They become sick or are injured, they get medical care or treatment and they get well. Unfortunately, this is not the case for those of us who suffer from chronic illness. We get sick, we seek medical help and the illness or disease doesn't go away. That often makes us long-term consumers of medical care and treatment. We are the unlucky ones living with what we are frequently now hearing discussed: pre-existing conditions. >>
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Books |
What Cindy's Reading
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My favorite books are always ultimately about the strength of the human spirit to get us through times of adversity. The following books represent both fiction and nonfiction that fall into this category. Enjoy!
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Lillian Boxfish Takes a Walk
by Kathleen Rooney
I listened to this audio book while walking each morning. I loved it! It was a fabulous story of a woman in her eighties who lives in New York City. On New Year's Eve, she sets out for an early dinner and ends up taking a nostalgic walk and revisiting many of the places of her earlier life and a few new ones. I loved her spunk and her marvelous way of describing events and people. I felt like I was right there with Lillian on her walk and was sorry when she returned home and the book ended. If you can listen to the audio version, I highly recommend it.
Option B-Facing Adversity, Building Resilience, and Finding Joy
by Sheryl Sandberg & Adam Grant
Of course I read this book! Resilience is my favorite topic. In case you haven't heard of the book, Sheryl Sandberg is the COO of Facebook who lost her beloved husband unexpectedly. It is a book about how she and her two young children worked through grief. I thoroughly enjoyed this book and found the strategies that she shares to be useful for anyone dealing with life's challenges. What I loved the most about the book is that it shares ways to move beyond the challenge (grief in her case) and learn to slowly enjoy life again.
Whistling Past the Graveyard
by Susan Crandall
I loved this book. The story is set in the summer of 1963 and is told by nine-year-old Starla. Starla has not seen her mother since she left Nashville when she was three to become a star in Nashville. This is Starla's adventure through the segregated South and about what happens when she finds her mama. It is sad at times, but I loved Starla's spunk. I looked forward to reading it every day. I highly recommend it!
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Read Cindy's latest blog entries
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Speaking |
2017 Scleroderma Patient Education Day
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It was my honor to address attendees at the Scleroderma Patient Education Day in Mars, Pennsylvania on June 10th. Co-sponsored by the American Thoracic Society, the University of Pittsburgh Medical Center and the
Scleroderma Foundation
, this patient-centered event featured rheumatologists and scleroderma researchers.
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| Sharing a laugh with audience members during my speech, "Live Beyond Limits." |
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With Kerri Connolly,
Scleroderma Foundation National Director of Programs and Services
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SPEAKER BOOKINGS:
Cindy is currently booking speaking engagements for 2018. Her keynote speeches for
patients and
healthcare professionals have inspired audiences around the globe with her uplifting messages of hope, optimism and overcoming challenge.
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ABOUT CINDY CONEY
Nationally recognized keynote speaker and resiliency educator Cindy Coney has assisted thousands in moving beyond "coping" with limitations to recapturing joy, balance and freedom through her speeches and pioneering educational training for patients and healthcare professionals. Diagnosed with lupus in 1980, Cindy has traveled the globe to share her story of thriving after a chronic diagnosis.
Read more
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Copyright © 2017 Cindy Coney. All Rights Reserved.
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