In Memoriam: Renee Paper


It is with great sadness that I inform the bleeding disorders community 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, (http://groups.msn.com/WomenwhoBleed) 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.”

Renee’s funeral will be held Monday, November 12, at 2:00 p.m. at:
Mount Sinai Hollywood Hills–Tanach Chapel
5950 Forest Lawn Drive
Los Angeles, CA 90068
www.mt-sinai.com/directions

Donations may be made to:
Temple Bnai Hayim
4302 Van Nuys Blvd.
Sherman Oaks, CA 91403, or

The National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY 10001

Cards may be sent to:
Harry Paper
4004 Sapphire Drive
Encino, CA 91436

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.

(Photos: In Puerto Rico, laughing about the spit, 1999; One of Renee’s famous post cards; In Connecticut at Camp Hole in the Wall Gang for a VWD family weekend)

NHF 59th Annual Meeting: Good Times, Changing Times

NHF’s 59th Annual Meeting wrapped up today after a full three days of workshops, lectures, children’s activities and wonderful social events. It’s estimated over 2,000 people attended, but certainly this was a record attendance judging from the crowds. This was a great time amidst the changing times we now face with tighter insurance reimbursement, which is affecting everyone.

Held in the family-friendly city of Orlando, Florida, the event attracted families from across the country. Because the US is the world leader in factor concentrate manufacturing, and also is a world leader in hemophilia research, the event drew in visitors from Mexico, Guam, Puerto Rico and even China. Held at the stunning Orlando World Center Marriott, the venue offered plenty of space for all the meetings and is close to the theme parks Sea World and Universal Studios.

This was my 16th annual meeting, and I think I saw more of my long time friends and colleagues than ever before. We all laughed at how we have changed over the years, and marveled at our children, now in their teens and 20s. We remember those we have lost, and are deeply grateful for those still with us.

My main task was to be present for a book signing of “Raising a Child With Hemophilia,” edition 4, completely revised and redesigned, and supported with a grant by CSL Behring. We gave away many copies and heard many stories of how this book, first launched in 1991, helped so many families through the early years of child rearing. Indeed, some of the moms who first submitted stories for the book, back in 1989, were actually there! This included for me a surprise visit by Lou Ann Helmen and her son Stephen, whom I have not seen in over 10 years, and who gave me many insights into hemophilia when I was first writing the book.

I also saw Jocelyn Bessette Gorlin, now of Children’s Hospital of Minneapolis, but who was originally at Boston Children’s Hospital, and was the nurse who first called me on a Friday afternoon to say “Your son has hemophilia…” Jocelyn was the first person to introduce me to and walk me through hemophilia, and she encouraged me to write my book, and also served as medical editor. To see her again… well, there just are not words! She knew Tommy as a newborn, and gave us education, support and friendship during our rough and tough times.

I attended a great symposia, sponsored by Baxter, on Transitions, and heard wonderful advice from Susan Zappa, RN, of Cook Children’s Medical Center in Fort Worth, Texas, and Danna Merritt, MSW, of Children’s Hospital of Michigan, Detroit. Transitions is a key focus area for everyone in hemophilia now, as we usher in a new generation of young adults who mercifully escaped the HIV era in the mid-eighties and who are now young adults and striking out on their own. The panel gave advice on how to equip this generation with skills and tools to live on their own successfully with a bleeding disorder.

In between sessions, families could stroll among the many booths, where pharmaceutical and home care companies provided representatives, to answer questions about products and services, and educational items about bleeding disorders.

After a day full of networking, sessions, meetings and lectures, families relaxed with evenings at Sea World, compliments of CSL Behring, and last night, Universal Studios, compliments of Baxter. After the rides was DJ-driven dancing where everyone–industry, patients and medical providers–could party.

Thanks to NHF for their incredible hard work and dedication. These events are mammoth and none of us can truly appreciate the effort that goes into it, especially when the event proceeds without a hitch. NHF is to be commended for this fabulous event. Thanks also to all the many corporate sponsors, including home care and pharmaceutical companies, and the various nonprofits, who all provide financial support. The Florida chapters excelled as our hosts. Next year’s meeting is in Denver, Colorado and we all hope to see you there!

(Photos: Booths; with Debbie Adamkin and Debbie de la Riva, friends, moms and also chapter executive directors; with Delin Kong, president of Hemophilia Home of China; with Johnny Marquez, new president of the Puerto Rico chapter)

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