What is NOW?
NOW stands for National Outreach for von Willebrand. Over the years, von Willebrand Disease (vWD) has always been “lumped” in with hemophilia. Well, NOW is the time to focus exclusively on von Willebrand Disease! NOW is a national educational symposium for individuals and families who are living with this chronic disease. It is a forum to learn about new medical advances, gain tools that can help you manage vWD and to share with others facing the same or similar challenges. We will bring in expert healthcare professionals who can best address the issues unique to vWD. Funded through a grant by CSL Behring, the Arizona Hemophilia Association is excited to host this national conference focused specifically on von Willebrand Disease.
Why Should You Attend?
Be part of the National von Willebrand Disease Conference dedicated exclusively to those affected by the disease. Participants will be given the opportunity to come together with other individuals around the country with vWD to network, gain knowledge and have fun! Those who attend will be given the tools necessary to start their own local vWD Support Group, allowing the information gained from the conference to be shared at the local chapter level.
Who is Eligible?
Attendees must have von Willebrand Disease and/or be a caretaker of someone who has it. The conference is funded to accept a limited number of participants. We encourage each chapter to reach out to the vWD Community in their local area to make them aware of this unique opportunity. Families are welcome and there will be educational activities and daycare for children.
Participants will be given the opportunity to come together with other individuals around the country with von Willebrand Disease to network, gain knowledge and have fun! Those who attend will be provided tools to start their own local VWD support group, allowing the information gained from the conference to be shared at the local chapter level.
The conference is generously sponsored by CSL Behring.
If you are interested and would like to know more, please send us an email at NOW@arizonahemophilia.org or call us at (602) 955-3947.
Read below for comments from attendees and speakers:
“Thank you so much for your involvement in this event. I cannot put into words how much this means to me.”
“I have never in my life heard so much talk about von Willebrand Disease Type 2B. It is so validating to hear this!”
–Attendee (speaking after presentations made by Dr. DiPaolo and Dr. Kouides)
“I am so grateful to you all for organizing this conference. I have dreamed about a program similar to this one ever since I can remember.”
“My career involves putting together large national conferences. It is apparent that you all hit this one out of the park. Everything flowed smoothly.” -Attendee
“In April, my family and I attended the Nation Outreach von Willebrand (NOW) Conference in Phoenix, Arizona. Now is an educational conference, organized by the Arizona Hemophilia Association and generously funded by CSL Behring. The Conference focuses exclusively on Von Willebrand Disease. The weekend was packed with presentations and panel discussions addressing a wide range of topics, from coping with the various challenges of living with bleeding disorders to recent medical advances. Because the schedule included several blocks of small sessions on different topics, that were offered simultaneously and then repeated once, attendees could really tailor their experience to suit their own needs and interests. The speakers were uniformly impressive. In addition to deepening my understanding of a chronic disease that my wife and son live with and getting practical advice from experts in the field, I got to meet and spend time with families from around the country who have their own stories to share. The conference really exceeded all of my expectations.” – Mike Hoernlein
From Winter 2017
“NOW is a national educational conference for individuals and families who are living with von Willebrand Disease (VWD). It is a forum to learn about new medical advances, to gain tools that can help you better manage VWD, and to share with others facing the same or similar challenges. Expert healthcare professionals are brought to the conference to address issues unique to VWD. With funding by a grant from CSL Behring, the Arizona Hemophilia Association is excited to organize this national conference focused specifically on von Willebrand Disease. Two HNC members were able to attend the conference this year. Following is some information about their experience in their own words. If you are interested in attending this event in the future be on the lookout for announcements from HNC. While HNC promotes this important event, all registrations for attendance and applications for travel assistance are handled directly by Arizona Hemophilia Association. If you would like to be placed on the mailing list for updates on future conferences, email Arizona Hemophilia Association at NOW@arizonahemophilia.org or follow their NOW Facebook Page for updates.” – Attendee
“A whirlwind – that’s one way to describe what happens in less than 48 hours with a full schedule centered around learning about, and living with, von Willebrand Disease. The bulk of the informational & educational sessions occurred Saturday. Dr. Montgomery’s address on VWD was definitely full of information, some of which I knew, and some of which was new to me. All was useful. I was thoroughly mesmerized by Dr. Sinha’s discussion of the Science of Stress (and how to manage it) – detailed studies of how stress affects our bodies & especially our brains, sleep, digestion, nutrition, etc. Much of what I personally have experienced with several chronic illnesses was clarified. I found challenging methods for dealing with these stressors, and hope to make use of them in the future. A second session from him dealt with learning how to sleep better; here again, this is a subject I need to learn for myself. On Sunday, Jerry Erwin, a certified trainer & leadership coach, a dynamic speaker, challenged us to discover WHO we are, and what charges our batteries – also learning what drains them, so as to avoid those drains. One of the other significant benefits from attending this meeting was the opportunity to network with other people with VWD. While I’m still in the “senior” category, I wasn’t the absolute oldest person in the room with the disorder! Oh, yes, one of the interesting facts gleaned from the medical experts is the discovery that VWD levels tend to increase as patients age. They don’t yet know what that means, perhaps that we need more, though that wouldn’t explain how or why our bodies learn to make more with age. It’s just one more piece of the puzzle. The final bonus for me personally was my ability to take advantage of the trip, and add a couple of days up front for personal time (paid for by me, of course), and the opportunity to spend the better part of one day on the south rim of the Grand Canyon.” – Linda Woodard
“Once again, I had the pleasure of attending the NOW Conference in lovely Phoenix, Arizona in November. This is a very beneficial conference for anybody with VWD, as the opportunities for education and networking are immense. It is designed for those of us in the bleeding disorders community with von Willebrand Disease to come together, connect, learn, collaborate and share information. Numerous breakout sessions include topics related to VWD and also others such as stress, nutrition, exercise, and advocacy. Several experts in the field, including Dr. Robert Montgomery, were available to answer questions throughout the weekend. My personal favorite speaker was Dr. Ronesh Sinha. He is very passionate about his work, and I learn something new each time I hear him talk. He did a session called Sleep Better Workshop this year and spoke about how insomnia is linked to so many diseases including diabetes, depression, and Alzheimer’s Disease. We were also taught key ways to increase our sleep quality and duration. I am always ready and willing to share my personal journey with VWD with others and listen as they share their stories with me. We spent time over the weekend doing just that. My hope is that through these connections we learn from each other and share information to help ensure that women are being diagnosed more easily and at a younger age than I was. The NOW conference offers something for every man, woman, and child in attendance, and I would highly suggest attending if you have von Willebrand Disease and have never been.” – Cheri Clark
We continue to monitor the CDC and the State of Arizona COVID-19 recommendations for large group events. In the interest of safety for all involved, we feel it is best to wait until 2021 to hold the NOW Conference. We are looking forward to holding the conference once it is safe to travel and meet in large groups. Thank you for your continued support in our efforts to keep everyone involved safe.
There is a refundable deposit of $50 for an individual or $100 per family to attend the conference. Once your application has been accepted, we will send you the information to complete your deposit. Failure to respond in a timely manner could jeopardize your acceptance to the conference.
What is Included
If a flight to Phoenix is needed, it will be provided as well as a shuttle or taxi to the resort. Conference and hotel rooms for the dates of the conference will be provided. Dinner for Friday will be provided and breakfast, lunch and dinner will be provided on Saturday. Breakfast and boxed lunches will be provided on Sunday.
NOW Conference – Youth Programs
As part of the planning committee for the youth programming at the NOW conference, we try to find the delicate balance between providing education for the youth, but also having some fun.
While the parents are at their adult programming, we have the youth split up into two different groups 0-4, 5-12. The 0-4 age group are entertained by nannies.
The 5-12 age group participate in multiple educational and fun activities throughout the weekend.
We encourage teens, 13 and up, to attend sessions with their parents.