Over the next several months, Alain Baumann will be hosting a series of Questions & Answer sessions with World Federation of Hemophilia (WFH) leaders. Today we hear the thoughts and opinions of newly-elected board member Dawn Rotellini (U.S.A).
How did you get involved with the World Federation of Hemophilia (WFH)?
I knew of the WFH’s mission—Treatment for All—long ago when I first became actively involved in the bleeding disorders community when my son was very young, but I only had a vague understanding of what the organization was about. I became much more familiar with the work of the WFH once I started working for the National Hemophilia Foundation (NHF) in 2008. At that point I was responsible for the consumer tracks at the NHF and I was helping to schedule the WFH educational session each year. I gained a much deeper understanding of the impact of the mission of the WFH when I attended my first WFH World Congress in Melbourne, Australia in 2014. I had the amazing opportunity to attend and present at the national member organization (NMO) training and meet so many people from all around the world that the WFH was directly impacting. I could see how their lives were being changed and how they were getting better access to treatment. It was very powerful. I learned so much at the training and that Congress.
Why did you decide to run to become a member of the WFH board?
I’ve become ever more involved with WFH since 2014—not just through presenting at the 2014 NMO training, but also through the work I did serving on the multi-disciplinary planning committee for the WFH 2016 World Congress in Orlando that the NHF hosted. I have been working with the Coalition of the Americas, I’ve worked with the Indian Federation of Hemophilia as a pilot Youth Twinning program partner, I’ve attended the VWD Global Working Group, I’ve served on the planning committee for the WFH Gene Therapy Round Table, and I’m currently serving on the board for WFH USA. Every facet of these different roles and experiences has given me a greater understanding of what it means for patients to not have access to treatment, care and education. It is simply not acceptable that 75% of people with bleeding disorders in the world don’t have access to treatment.
These rich experiences have made me passionate about the mission of the WFH. I have learned so much in 10 years at NHF in the Chapter Services and Education Departments and I thought I could make a difference and bring my experience in creating, growing and helping to make NMOs, which are non-profit organizations just like the chapters of the NHF, sustainable. I also wanted to run to give another voice—a woman’s perspective, a mom’s perspective, a carrier’s perspective—to the board. I truly believe in access to care for all.
What makes you proud to have been elected to the WFH board?
I’m so incredibly proud and honored to have the trust of the NMOs who voted for me. I’m proud of the work that WFH does—the staff is amazing. I’ve seen such growth at the WFH, including the creation of the network of seven Regional Managers. And I’ve seen first-hand the direct impact all of this is having on the community. I’m also proud of the unanimous vote by the WFH Board earlier this year to make VWD a priority; the investment the WFH made to develop the World Bleeding Disorders Registry (WBDR) to help pave the way for further access to treatment; and the first annual Gene Therapy Round Table—just to name a few examples. I’m so proud to now be a representative on the Board of Directors.
What is the main impact you hope the WFH will have in the future?
I hope to be able to use my experience creating a strong chapter network at the NHF to further help the WFH expand its support of NMOs. Understanding the needs of NMOs is so important. We need to listen to them and understand how to prioritize where to invest funds and resources for them. We also have to have a concrete idea of the training and education that is needed at the NMO level to help their leaders effectively serve their members.
I hope to be able to support the WFH staff with NMOs but also in other areas. For example, I hope to play a part training and bringing in the next generation of leaders like what we’re doing with the Youth Twinning Program. I also hope to be able to lend a strong voice to women with bleeding disorders.
What do you think is one area where the WFH could improve?
That’s a hard question to answer since I’m relatively new to the organization and still learning about it. I think the WFH could—like many non-profits—become even better at raising the funds that are needed to do the work we need to do. Money is a scarce resource. We need money to distribute factor, to deliver programs and training, to maintain a robust database and to show NMOs how to collect consistent data and use that data for advocacy. It’s the job of the board of directors, I believe, to ensure that we have a sustainable funding model.
I think that the WFH could also be improved by diversifying its board—we only have two women on the board currently with the election of myself and Barbara Konkle. We also need VWD representation and some additional skills in the WFH team such as expertise in health economics, fundraising, development and marketing.
What is your personal involvement in the bleeding disorders community in your country or region?
First and foremost, I am the mother of a 20-year-old son with hemophilia. That is what drove me to become involved in the NFH 20 years ago and to start the chapter in Montana where we lived at that time. I have been blessed to have been able to work for NHF for the past 10 years, and before that to serve as Executive Director for two chapters (Montana and Pennsylvania). I currently oversee three departments at NHF: Chapter Services, Education and Conference & Travel Services. NHF must serve every person with a bleeding disorder in the United States, and we can only do that through our strong network of 52 chapters—so we do what we can to support them. I love my job!
If you had $1 million to donate to the bleeding disorders community, where would you like to see your donation go?
That’s so hard to answer since $1 million isn’t enough to ensure that every person in the world is diagnosed or has access to treatment. I would invest in the development department at the WFH so that they could leverage that money so that the donation could go further. I would invest in providing trained and paid staff to NMOs throughout the world and in more WFH staff to support those NMOs. Like I said above, we can only achieve access to Treatment for All through a strong network of NMOs. Now, if you gave me $100 million to spend—then we could really shake things up!
To read about how other WFH leaders answered these questions, please click here.