San Antonio, Texas.I first heard about Karen Paper through friends who read an article about her in a Windsor, Ontario newspaper. I contacted her at the Magee Clinic and her first response what that she had little experience with athetoid cerebral palsy (floppy kind) and she did not want our family flying from Texas to Toronto for that reason. But after some conversation, we discovered we were cousins about 10 times removed and by marriage. We arrived at the clinic and there is where we began our long journey with nighttime electrical stimulation that we have used over our son's body for at least 25 years. It prevented the deformation of his left leg as he grew and gave him muscles strength to work with in therapy and at home tasks. She was also the first person to recommend Ankle Foot Orthotics. San Antonio was very behind in any help for people with cerebral palsy. I along with several other women whose children had cerebral palsy created a non profit organization and our first speaker was Karen. She was scheduled to talk on a Saturday and after her talk, we heard from so many people that she gave it again on Sunday.
Over the years our family watched her develop her programs and return to San Antonio to give her workshops as people came from about 10 surrounding states to hear her and learn. In my mind is burned that if our son ( an d others) can do something once, he can do it again. We learned about the plasticity of the brain long before the medical community at large accepted that concept. She also recommended we go to the Upledger Clinic in North Palm Beach 25 years ago when that clinic was at it's peak in its multi approach. Those were important visits, all contributing to our son's health. Because of Karen's introduction to the Upledger clinic and our work there, I brough one of the therapists to San Antonio to do an inservice at the University of Texas Medical School for therapists. A few therapists then took the training and then could offer the night time electrical stimulation along with their coursework through Upledgers. She also in her very honest way said that the only way to make changes in doctor's willingness to try new ideas to help our community was to affect their pocket books. So with the help of American Airlines, we flew kids to Toronto and other places for Botox injections. The latter of course has to be used with a intensive stretching to take advance of the results of botox.
In other words, her knowledge got the information ball rolling here in Texas and through information dissemination to parents, before the internet, all this information became available as myself and a group of women wrote newsletters that we dropped off at appropriate places and then mailed.
It all began with Dr. Karen Paper to whom our family and so many families in Texas owe a great deal of gratitude
Our son is now 40 and the miracle is that he is not deformed, has strength although he is still floppy. But he continues to work and improve at age 40 and continue to use electrical stimulation.
Karen was also load of fun and I loved her outspokenness which was a trait we held in common. THANK YOU KAREN.
It’s the start of a new year and I still can’t believe Karen is not physically present with us anymore - although I feel her presence almost daily. There is no one who changed the way I thought about my daughter, Cathryn’s care and future more than Karen Pape. I am eternally grateful to her for changing the future for Cathryn. I loved Karen’s non nonsense straight talk, brilliance and huge heart. I’ll never forget Karen’s kindness to me and my daughter in helping find the first pair of pretty shoes that fit Cathryn’s feet, and how Karen made Cathryn really believe that she was an athlete and could run and walk better than we ever thought possible, despite having CP. I know for sure that Karen was smiling down on Cathryn when she became a national adaptive track and field champion 😀. I personally miss Karen’s friendship and wise counsel every day. You are forever in our hearts Karen! Miss you. Till we meet again, Cindy and Cathryn
I was so saddened to learn of Karen's passing. I was close friend of her parents and through them
met and learned to appreciate all Karen's achievements. Enjoyed trips with father Brian and her
to the Ristigouche Salmon Club. Such a lovely talented lady.
On behalf of the entire Webb family, I send our heartfelt condolences. Karen was so kind and generous after my father's stroke by helping to align us with experts. I will forever think of her as I paddle by her beautiful Stony Lake garden.
So sad to hear this news! I heard Dr. Pape speak @ a conference held by the Weinberg Family Cerebral Palsy Center in 11/2015. We connected instantly because we had the same first name & last initial. Through the conference and some emails, she reinforced my belief that there are answers to the challenges of aging with CP.
I worked with Karen for two years in Pam Fitzhardinge's unit forty years ago. Though only a year older than me, she had confidence and vision, and I'm not surprised at her subsequent carreer. I have worked in Ireland since 1978 so have been out of touch, but I look forward to reading her book.
I only connected directly with Karen in the last 2 years, due to my work with children using functional electrical stimulation, or FES, (I think Pia Stampe connected us), but have been familiar with her work for a long time. Her caring and desire to advance the care of children with CP was evident, as she contacted me on Linked In, and wanted meet me for dinner at the 2017 AACPDM Conference, where she was presenting, and discuss my approach to using FES. One of my regrets in life was that I was unable to meet with her in person; however, we did share long emails about her book and my approach to treatment, as well as her own thoughts on electrical stimulation. Karen offered to send her book to me, but I had already purchased and read it when it first was published, and I was so inspired by her life. She was so knowledgeable, and so open to hearing others' ideas! After that, she generously offered to share my course offerings on her website. Truly a giant in the field of CP treatment, her care and commitment will be missed by the therapists" and families' lives that she touched.
I am very sad to hear of Dr. Pape's passing. I had the privilege of being seen by Dr. Pape and her staff at Magee Clinic in 1990 when I was a senior in high school. I am a long time client of Easter Seals Dupage and Fox Valley in the United States. My therapists suggested that I go see Dr. Pape. My mom and I spent three days learning from her and her staff. She was a great doctor because she really listened to what my goals were as I was getting ready to go away to college. She made learning how to use the TES stimulation system on my legs easy for a future college student. Dr. Pape also taught me about the importance of staying as physically active with cerebral palsy as possible. I will forever be grateful for the opportunity to meet her. An incredible woman!
It has been my privilege to get to know Karen as we worked on her groundbreaking book, The Boy who Could Run But Not Walk. In this book, Karen makes a compelling argument that children with brain damage can be spared the devastating effects of Cerebral Palsy. She has made a huge contribution to our understanding of early brain damage, and I hope her book will inspire parents and health professionals for a very long time. Thank you, Karen, for being a tremendous author and collaborator. From her publisher at Barlow Books and from an admiring friend, Sarah Scott.
I was deeply saddened to learn that Karen had died. We corresponded over the past five years as my daughter had a stroke at birth and Karen was a huge supporter of my daughter and me as outliers. This winter, I had reached out to Karen to find a blog post she wrote about my daughter because another parent was seeking it. I've just republished it as Karen knew other families wanted to read this (http://marazoemia.net/2018/06/15/a-true-outlier-mia-skins-the-cat/). In the months after I knew that Karen was sick, she responded to my inquiries about her health by enlisting my help to design review her updates to her website, to collect resources to share as part of her legacy. I did what I could, and I would love to be actively involved in the foundation. In the past year, I've made a major career and life decision to transition from nearly two decades in software engineering to focus on rehabilitation, particularly to support children with early neurological difficulties. Even though our correspondence was limited and I never got to meet Karen in person, she was a key mentor and inspiration for me, part of why I decided to make this leap.
So sad to see Karen gone but I'm certain she was fiesty to the end! The last time I saw her, my wife and I joined Karen for a very pleasant lunch at her Florida abode in the spring of 2017. Although I first did business with Karen back in the early 80's and we met infrequently over the years, this was the first time we were able to overlap and get together in our mutual southern winter homes. John & Erin Reeves (Ottawa)
Karen was a Brave Pathfinder, a Courageous Truth-teller and an Extraordinary Scientist. She was always ready to ask the next question and to challenge the most entrenched dogma and assumptions, even her own. I interviewed and filmed Karen when she was first working with a young child, Michelle Kungl, who was given a bleak prognosis for a short, dependent life, and who is thriving today at 35, (see above tribute). I am in awe of the strength of Karen's convictions, her utter refusal to take 'no' for an answer and her astounding persistence and perseverance. In 2003 Karen agreed to be included in "Northern Lights: Outstanding Canadian Women". I hoped that young women reading her story would be encouraged by how she found her way into her chosen field, and uplifted by her discoveries and enduring commitment to both her patients and the advancement of science. Personally, I loved her sharp mind and her sense of humour, and found her uncensored language refreshing and bracing. Saying what she saw, no holds barred with people she trusted, seemed to help her to cope with the upset she felt when her ideas and discoveries were met at times with a stubborn refusal to explore and question. She was tough in the best sense. In her own words, she had a "less than conciliatory personality", (which has its advantages). But she was also a woman of great sensitivity and empathy, who cared and loved deeply, and understood the human condition. We have lost a truly Outstanding woman, physician and Canadian. We can best honour her by carrying her mission forward with a similar passion. Thank you Karen, for making the world a better place for all of us and for shining your brilliant light into corners of ignorance and darkness.
I wish I could be in Toronto today to celebrate Karen's life and work. I too, like many of you, am at a loss for words in describing the impact that Karen Pape MD had on me in my professional life as well as scores of others, whose lives she touched. I loved her "edge" and ability to state simply what is. Every day in my clinic I hear Karen's words as I interact with clients and families. So many pearls of wisdom, but one of my favorites is, "In my world, two year olds don't make medical decisions"...gotta love it! With tears in my eyes, I will raise a glass of chardonnay today and toast to my mentor, my hero and my friend, Karen Pape. For those of us who knew her well, carried out her work and benefited from her boldness, it may now be time to carry her legacy forward.
There are no words. The world has lost such an incredible feisty trailblazer for the cerebral palsy community especially the teenagers. Teenagers are often thought of "that's it, they are where they will be" but Dr. Pape didn't believe that. She even proved that with my son, Mason. Mason made tremendous progress following an intensive program with Pia Stampe, PT under Karen's direction. Dr. Pape was so knowledgeable, so loving, so approachable, generous, kind, and so passionate about wanting change for our kids!!! My heart aches for her family, friends, and all of the lives she has touched. However, I'm huge believer and I know that Karen will continue her work from the other side. The work she left on Earth (i.e. her blogs, books, relationships) will continue to flourish, and she will guide and mentor us through her spiritual side (versus physical side). Rest, Karen. Rejoice in heaven and bask in your accomplishments. We look forward to you "showing up" in different ways and continuing your trailblazing efforts from the other side. You were an amazing person and that person (humanly body) was made up of an AMAZING soul and spirit!!! Love you, girl!! Thinking of you, family, and friends as your life is celebrated today in Canada!
On Sunday, 6/10 I submitted condolences via this entry and hope they were received by the family can someone please let me know, thank you, choppy
To say that Karen influenced our daughter’s life and our family would be an incredible understatement. I met Karen 36 years ago, two days after the birth of my beautiful first child, Michelle Kungl. During the delivery, it was thought that Michelle’s spinal cord had been severed at C3 and as a result she required an immediate tracheostomy and to be put on a life supporting ventilator. Her diagnosis was dismal. We were told that she would not likely live more than a few months and that she would never have any function below the neck nor be able to live off of a ventilator. But Michelle survived. She lived at Sick Children’s Hospital for a full 7 years, the first 3 in the ICU. She was transferred to Bloorview for the following 7 years, only able to come home with support staff for a few days at a time. The whole time and up until months before she passed away Karen was ever present in her and our families lives. Karen never gave up trying to come up with ideas about how Michelle’s situation might be improved. Karen Pape is the reason Michelle finally sat up on her own at the age of 3, walked at the age of 7, was weaned off the ventilator for longer and longer periods of time. Fast forward to today and you will find that Michelle spends as much as 10 hours at a time free of her ventilator, lives in her own apartment and drives her own vehicle to her full-time job. These were the unbelievable accomplishments that Karen directly helped Michelle to achieve. Karen was an ongoing advocate and cheerleader for Michelle and our whole family and she will be remembered with love and appreciation forever.
I have lost someone I truly respected, admired and loved. Your smile, wit and honesty will be sorely missed. I was privileged to have you be a part of my life and will miss you. You will be with me in my heart eternally.
Karen was a great friend to March of Dimes. We were very saddened to hear about her passing. Blessings during this time.
The Cerebral Palsy community has lost a great advocate and warrior in the medical world! May God Bless Dr. Pape! Thank you for all your help you gave countless individuals like me who live with the daily struggles of cerebral palsy!
Dr. Pape, you've done well. You opened up our minds to new concepts and new tools. You helped so many children, so many families. Rest in peace.