Dr. Karen Pape was a wonderful person who dedicated her life to people with cerebral palsy. She definitely changed my life. I worked with her a lot in the swimming pool which helped me walked, talked, and feed myself better. She was a wonderful person who will truly be missed.
Please accept our deepest sympathy. We were very saddened to learn of Dr. Pape’s passing, and appreciate this opportunity to share our thoughts with her family, loved ones, friends and co-workers. Even though it is difficult to find the words at a time like this, hopefully it will help those dearest to Dr. Pape as they journey through this time of loss. Twenty-five years ago our family became acquainted with Dr. Pape through our daughter, Laura’s, occupational therapist. Laura was born with spastic diplegic cerebral palsy. We initially began using Dr. Pape’s Stim program. When Laura was four years old, Dr. Pape invited her, myself and our therapist, to travel to Toronto from our home in northwest Iowa, USA. We were all a part of the video that Dr. Pape produced. It shared about the Stim program and featured several children who were currently using it. That whole experience was truly a priceless gift which allowed us to personally meet the amazing woman whose life was centered on helping people like our daughter. We will be forever grateful for that opportunity, and for the life-long dedication of this incredible woman who sincerely cared about the precious lives of those who were living with cerebral palsy – even a spunky little girl from a small town in Iowa. I doubt you can imagine the sheer joy we felt when Dr. Pape called to visit with both Laura and myself shortly after her recent book was released! We couldn’t believe this prestigious woman was contacting us! Her pure commitment to helping others was again being reflected in the genuine talks we shared, so many years after our initial contact. She still wanted to know how Laura was doing, she graciously acknowledged the wonderful life Laura is living, and she enthusiastically told us about her latest research. She kindly sent each of us an autographed copy of her book and encouraged Laura to pursue the new avenues she wrote about. We were so deeply humbled by Dr. Pape’s unending determination and passion to “help” and to “serve”.
We will forever hold a special place in our hearts for Karen Pape. Her legacy will live on through many grateful recipients of her wisdom and love.
With love and prayers, The Denekas Family
I am really saddened by the news. Karen was a true voice and pioneer in the CP community. I met Karen about 25 years ago as a patient at the beginning of my journey. Her intelligence, coupled with her kindness and strength and passion was and is a rare and special combination not easily found in this world. She will be greatly missed! She was so ahead of her time. In the world of CP and Neurorehab/Neuroplasticity, she not only talked the talk but she walked the walk. RIP Karen. My condolences to her family and loved ones. Tzuriel Frankenthal, Beverly Hills, California
We are all so sorry for your massive loss. Karen was so kind, so compassionate, so tough and so resilient. Its a sad loss for you all and the rest of the world. She will be sorely missed.
I am beyond sad that we have lost such an amazing lady, humbled by her life's work and ever inspired by her mission. I am so grateful that I had an opportunity to know her and share in the tiniest part of her great story. She certainly did not go quietly and I continue to be in awe of her endless passion and look forward to seeing where the foundation she set up leads us all to.
I remember when Karen reached out to me years ago via LinkedIN. I run the NICU Pros list, Early Intervention Pros list and more and she knew instantly that we needed to talk as she prepared to publish her book "The Boy Who Could Run But Not Walk." We talked by phone and there was an instant connection. I was excited to hear about her background, her work and her book. We worked on ways to help get it out there and we did. At the time I quietly noted to Karen my former 30-week preemie, then 11 years old had always had some issues with running and with walking and that I had always quietly asked doctors if this wasn't more than just low muscle tone and later more than gross motor delays and still later more than just Developmental Motor Coordination Disorder. Little did I know that I would be needing Karen's help when Becky was diagnosed officially at 13.5 years old. My frustration was audible to Karen as we talked by phone that winter. This rebel, this "difficult" person in the field of CP and baby brain science was nothing but straightforward, understanding and respectful as I poured out my rage at the establishment in this field and how people didn't seem to truly get that this was a catastrophic mess in my mind. She helped me understand how things had played out medically and where the mistakes likely happened. She also confirmed and connected the dots with me that my daughter's "slight curvature in the spine" as told me months early by the baffled pediatrician was consistent with the CP. She gave me some ideas of where to start. After 6 months of typical PT, appointments and other interventions that burnt out my daughter and myself, we stopped everything and took account of where we were. And this was only in the first year of diagnosis so I could only imagine what other families before us had done to keep their minds straight and focused. After the new year I contacted Karen again noting that we were definitely struggling with this and wondered if she had other thoughts. We talked, she said it was time to go see Pia Stampe in New York and get a CP Intensive. A short time afterward we spent a long weekend in New York and Pia was truly phenomenal. Becky came away walking better, running better and with a confidence and excitement that floored my husband and myself. She looked at me and said, "Thank you." Yes, my TEENAGER! Prior to leaving Pia that last day, she took a video of Becky and myself to send to Karen who was by now very sick. To hear my daughter speak to Karen with such awe and gratitude was amazing. In a few days she got the theory, she understood what Karen had been trying to teach medical and therapeutic professionals for a long time. And she was living proof that it worked. I finally got to meet Karen a month ago in Toronto. I got to give her a hug, say thank you in person. I also handed her a note . . . from my Becky. It totally moved her. It was then that we discussed the impending foundation. While I know Karen would have loved to see this come together, I know she left this in very, very capable hands. She will be missed but she will always be remembered, always be thanked for being "difficult" for being that rebel. For every infant, child, teen and adult that has received help from her over the years is now her ongoing living legacy alongside her own family. We carry it forward for her. Thank you, Karen. Thank you on behalf of the thousands of families you have helped over the years including mine.
With Love & Gratitude,
There are no words that can express the loss to her family, friends and the world. Karen Pape was an amazing physician, clinician, inventor, researcher, author, and educator. She was a pioneer with thoughts, ideas and programs no one had even imagined. She always loved to talk about viewing the world from different paradigms (old woman/ young woman)? And was open to share her thoughts and knowledge with all. What a loss! If worth is partially determined by ones family and friends, Karen was truly blessed. She loved her children and Wing and Pia were incredible supports and companions. My heart breaks for you all. I toast the outstanding life Karen lived... by her own rules... and consider her a mentor and friend. Cheers and wishes for an ongoing legacy to a life well-lived. Trish
It has meant so much to me to have had Karen in my life and as part of my daughter's team. So much of what we work on and do is thanks to Karen. She educated me and guided me to learn how to assess the therapy we are doing and think about what to work on next and how. Not, only that, but the advice and stories have been so valuable in how I live my life. Karen was such a special person. We love and miss her.
A real soldier has fallen. Karen devoted most of her professional life to striving to understand and to improve the lives of children with cerebral palsy and other developmental disabilities. I celebrate her long life of dedication. With heartfelt love and gratitude and respect, Karen, for the time we spent exchanging our knowledge and ideas and your wine, I wish you a peaceful, joyful journey. Your friend, Billi Cusick
I'm broken. Dr. Pape personally responded to me after having questions about my daughter, then 5 years old, with right sided hemiplegia. I pray her legacy lives on and that she continues to fuel others to continue to research neuroplasticity & many other findings she has sparked. May you rest in peace, Dr. Pape. I pray that your family finds peace in knowing you are in a beautiful place & that your legacy will live on. You are now our angel...well, you've always been.
I met Karen too many years ago to care to remember. I went to school with her brother Brian. Brian, so sorry you have lost her. Long before she became a world renowned specialist, she was a recent medical school graduate, working at Toronto General Hospital. One night I showed up there with my 2 year old son who had accidentally fallen into a poorly stored storm window and badly cut his lip. And who should be there to stitch him up but Karen. Most would never see any evidence but when I look at my son, I often am reminded of Karen and what a great job she did. Very grateful. Bob Stone, Vancouver BC
To the extended Magee/Pape families: I was so sorry to learn of Karen’s passing. My husband and I were fortunate to know the Magee family (Brian and Bill were business associates and friends) and we enjoyed some great times with Karen. We admired her intellect, her commitment to her profession and to her patients, and always enjoyed her wonderful wit and ready laugh. I have no doubt she will be greatly missed. Warm regards, Marilyn Pattison
Dr. Pape became a lifeline for me as I began our journey after my daughter's initial diagnosis. I cannot express my gratitude enough for her research and advocacy for the children. Rest in peace. To the family, all of my heartfelt prayers to you as you mourn her passing.
When our daughter was diagnosed with a brain injury at birth and we found Hope For HIE, we also found the work of Dr. Karen Pape. Dr. Pape’s passion for neuroplasticity and guidance along the journey gifted us with HOPE and for that she will always be remembered and we will always be thankful. With our utmost respect and deepest condolences, The Riggins Family
Karen worked with March of Dimes years past and recently and we admired and respected her greatly. When she launched her book,
The Boy who could run but not walk, she celebrated our work with children who have neuro-motor disorders, despite having just learned of her having cancer. She was brave, funny, brilliant, dedicated and innovative. Karen was a crusader for children and adults with disabilities and we will sincerely miss her.
I am mother of Delfina (CP due to HIE, 2004-2007) & co-founder of The Delfina Baratelli Foundation for Brain Injuries Prevention & Repair (Buenos Aires, Argentina). I always followed Karen's work since I learnt about it almost ten years ago. She has made such a positive impact in the field and in so many children and families, not only in the US, but in many other places. She will be very, very missed but I have no doubt her work will continue to be forever helpful worldwide. Love & gratefulness from Argentina, Ximena 💚
I am one of the many, many therapists who Karen provoked to think differently. I had told her “my brain always hurt” after a Karen session. Just what she intended!!
One of her chosen last presentations, only a few weeks ago, was to make a final presentation to The NDTA instructors group. There was a great affinity with her philosophy and ours.
Karen was always very respectful and grateful to her mentors, as seen in her book.
To her family and friends , please know that SHE was the greatest mentor to so many in this profession.
Her personality and professional contributions will be very sadly missed.
After first meeting Karen a few years ago at a conference in Cincinnati, she became one of Hope for HIE's cheerleaders, a personal confidante of mine, and friend. Her contributions to families like mine, and those in Hope for HIE, are monumental... fundamentally shifting and embracing all that the word "hope" can mean for children with complex brain injuries and neurological challenges. There just aren't enough words to thank her and honor her for the work that has shifted the paradigm of treatment and approach for medical practitioners and families. THANK YOU to her family who supported her relentless work to advocate and champion this important work. She will be remembered by thousands and thousands of people, leaving a permanent mark of HOPE in each of our hearts. Many condolences from the entire Hope for HIE Board of Directors and thousands of families worldwide in our network to Karen's family and circle of friends.
I first met Karen more than 25 years ago when I was in assistant professor at the University of Toronto. I had never met anyone quite like Karen. She was unlike any other physician or academic that I had ever worked with. She had a truly unique way of looking at things and was not encumbered by conventional thinking. As a young academic, I found that very exciting to work with someone who didn’t seem to be boxed in by ordinary thinking.
We work together for a few years and then I embarked on my career that’s taking me all over the world. I did not communicate with Karen on a regular basis but occasionally we would communicate and it was always great to hear from her.
I’m glad that she was able to publish her book before her passing. As much as I thought I knew Karen well, I learned so many more things about her in reading her book. I believe it will stand as a testament to her legacy.
To her family and friends I extend my sincerest condolences for your loss. There will never be another person like Karen Pape and the world is so much richer for her being in it.
Watching a TedX talk of Karen on 8th November 2015 singularly changed our lives forever. Our son Oscar, then an 8 year old with Ataxic Cerebral Palsy on the other side of the world in New Zealand had no idea what I was about to get him into! I contacted Karen the next day who put me in touch with Pia and we took an 9 year old on tour to spend two weeks with Pia's team. What astounded me and was so unexpected was Karen's integral involvement - pouring over all his past specialist reports, requesting videos of him doing this and that, telling us to do it again as it wasn't good enough 🙂 Making no bones about incompetent assessments in some areas with Pia and Karen we got the full picture of our son's issues - fine/gross motor, speech, vision. She set us on a journey that I believed to the right course but one that I seemed to be a lone crusader in view on. I cannot thank her enough for the life changing input she had and I have certainly spread her message as far and wide as I can. Her book is what every family with a CP kid should read.
Driven, passionate and relentless sums her up to me with a constant need to question what we were seeing and how else we might tackle it. Such a selfless need to see better options for our CP kids and adults and with such care and dedication. The world is truly a lesser place without her shining light. Much love to her family and friends. In New Zealand we have a Maori proverb "Whāia te iti kahurangi ki te tūohu koe me he maunga teitei" which means "Seek the treasure you value most dearly: if you bow your head, let it be to a lofty mountain". I truly bow my head to Karen, such for respect for all she has given.