It is with great sadness that we’ve learned of the passing of its greatest advocate on von Willebrand Disease. Renee Paper died November 7, at age 49, after an eight week hospital stay following a fall. Renee had been on disability for the past three years, and yet received an achievement award just last Saturday at NHF’s 59th Annual Meeting, in recognition of her outstanding life’s achievement in helping others with bleeding disorders. People around the world knew Renee, as she traveled and lectured frequently, before her disability. As many of you already know, she had had gastric bypass surgery, loss a tremendous amount of weight in a short period of time, seemed to recover and was doing well, but then, health issues compounded. She had VWD herself, and also battled hepatitis C, and various other problems. Many of her friends tried to stay in touch by phone or by visiting her in Las Vegas over the past several years.
Renee was a personal friend, and also my co-author on the book “A Guide to Living With von Willebrand Disease.” She had traveled with me and my family to Puerto Rico and the Dominican Republic on business together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She was could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renee knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless if they had a disorder or disability.
Messages have been pouring in to me from around the world. Helen Campbell, UK, wrote: “Renee has been a great inspiration to me personally (and to other women) in raising awareness and promoting advocacy within, and outside of, the bleeding disorders community regarding the issues surrounding women and their bleeding disorders. Her work has touched the lives of many both directly and indirectly. It is a great loss for the Haemophilia communities and yet must be a greater loss for her family. Thank you, Renee. You made such a difference. From your acorns you saw great oaks grow, now the branches are reaching far and wide.”
Parimal Debnath from the Haemophilia Society of Bangladesh wrote, “It’s really sad news. My condolences for her family. May God rest her soul in eternal peace.”
Dr. Carol Kasper, renowned hematologist, Emerita Professor of Medicine, University of Southern California, Orthopaedic Hospital and colleague and friend of Renee’s, perhaps summed up Renee’s legacy and memory best:
“Renee Paper had a vision for Nevada, its own hemophilia foundation, its own hemophilia treatment center, and she made them happen. It wasn’t easy. Renee was blessed with energy, enthusiasm and perseverance. She had a great ability to organize and to inspire.
“She also knew how to have fun. She was the life of the party! I remember driving with her down a country road in Ireland, in sheep country. Sheep strayed across the road. Renee stopped and shooed them off, and you have no idea how hard it is to shoo a sheep. We cleared a bit of road, drove on around a curve, and, more sheep! We wound up in gales of laughter as we continued to shoo the sheep, and shoo and shoo.
“I am grateful to Dr. Jonathan Bernstein and nurse Becki Berkowitz, also Dr. Heather Allen, all of Las Vegas, who watched over Renee in her last illnesses, whenever Renee’s spirit of independence would allow it.
“I shall remember her achievements, but the images of her exuberance and hilarity are foremost in my mind at this time. Her name will be remembered.”
Good-bye to a tremendous leader, warm and loving human being, educator, visionary, and friend. There was ever only one Renee, and we will miss her. Please post your thoughts, stories and tributes to Renee here.
6 thoughts on “In Memoriam: Renee Paper”
I never knew Renee. But I could see the impact she helped make. When i was diagnosed I was told to do my own research (at age 17 without any family to support me) because so few doctors understood or were aware of VWD. I was thrilled to have a book produced – that I could give to people. I was thrilled as a business banker to see VWD posters in doctors offices. It takes a village to bring a change – but all villages have leaders. My name is Kimberly McCabe. I have always felt the effects of VWD. Understanding why I had bleeding problems made things easier. Reading about the work that people like Renee did gave me strength. I rarely see bleeding episodes as embarassing anymore – its just a part of me. I can lift my chin and educate people before i feel any self pity. I dropped out of school when i was severely anemic, depressed and had no healthcare or support. By the time I graduated I no longer saw it as something in my way. I saw as just VWD. I recently moved to Paris, France to complete a Masters program. Apparently the stress of moving greatly affected my blood coagulation. But that has not deterred me. I know…that if ever I feel backed against the wall…there is a community – a resouce to help me. And one day when i have built my consulting company, I plan to create a scholarship to help those who have VWD – still a greatly misunderstood disorder. I bruise from massages. I bruise from bumps. I have scabs from pimples that take weeks to heal. But in my world there was a hard working woman named Renee who never knew me…and was always helping me. Always making it easier for me to get proper healthcare, taking away my wories and putting my mind at ease. I guess heaven needed another angel. When i look at someone like Renee I can only hope that when I have children, I too will have a child compelled to help their fellow man. Dear Father of Renee – you did more than you can ever imagine. Thank you. I will light a candle at Notre Dame in Paris for Renne.
My name is Debbie and I have VWD type III. I had never met Renee but had contributed to the VWD book. I had planned to meet her the next time I was in Las Vegas. I was devastated to hear of her death and my deepest sympathies go to her family, especially her father. I have been through Hep C treatment the last couple of years and have not been able to get involved in the VWD community. In tribute to Renee, I plan to continue her fight for the VWD community in her honor. May God comfort her family during this difficult time. Debbie, New York
We’ve just discovered the passing of Renee. I am so sorry to hear about her and pass on my condolences to you and your colleagues who worked with and knew her. I hadn’t had replies to my correspondence to her for quite some time now so I assumed she wasn’t well.
I will miss her, knowing that she supported so whole-heartedly any endeavours in the haemophilia arena. Through her, I was able to access for some years your joint book on VWD which we distributed to the participants at the South African Haemophilia Nurses’ Training courses. I will miss her generosity and big heart and her willingness to share.
Jill Smith, Haemophilia Coordinator
Haemophilia Centre of Western Australia
Royal Perth Hospital
My family met Rene by chance in 2002 at a conference in Guam roughly 6 months after our 1 year old son had been diagnosed with type 3 Von Villebrands. Despite being one of the main lecturers, Rene took an hour out of her schedule to chat with me, give us a free copy of living with Von Villebrands, and to reassure us that this was definitely a condition he could handle and live with. Her words truly inspired us and we felt grateful that she spend so much time and energy advocating for Von Willebrand patients. Please give our regards to her family and thank them for sharing such a wonderful person with the world! Ken and Miwa Olson, Tokyo Japan
My family met Rene by chance in 2002 at a conference in Guam roughly 6 months after our 1 year old son had been diagnosed with type 3 Von Villebrands. Despite being one of the main lecturers, Rene took an hour out of her schedule to chat with me, give us a free copy of living with Von Villebrands, and to reassure us that this was definitely a condition he could handle and live with. Her words truly inspired us and we felt grateful that she spend so much time and energy advocating for Von Willebrand patients. Please give our regards to her family and thank them for sharing such a wonderful person with the world! Ken and Miwa Olson, Tokyo Japan
I will never forget your spirit in the drive to succeed with the founding of the NHF. Many are gone now but I still remember the great meetings with you across from St. Rose on the donated hospital space for getting the foundation up and running.
I miss Art and Ron too, but this emptiness will pass over time. Losing you creates a void that can never be filled in Nevada. I credit you with my knowledge of hematology and I still continue today in my work based on your efforts as an educator, nurse and advocate.
A friend