April/May 2022
In this Issue: Opening Letter: NHF Update from Brett Spitale, VP of Advancement Washington Days Recap Planned Giving In the News NHF GO: NYC Half Marathon & Run Red Stakeholder Spotlight: Hemophilia Alliance Young Hope Society Upcoming Events
An Ambitious Year Ahead Community has never been more important to NHF. Your support and generosity have made our community stronger than ever. I’m excited for the ambitious plans that lie ahead for this year. Our Research Team has held two workshops that marked the beginning of a community wide effort to develop the National Research Blueprint (NRB) for inheritable blood disorders (IBD). In attendance were researchers, providers, government and industry partners, and subject matter experts (SME’s) - a term we have adopted to recognize the important and unique expertise and perspective of members of our community affected by IBDs. The NRB builds upon the work accomplished by hundreds of key stakeholders within our community, including SME’s. This culminated in the Fall of 2021 at the State of the Science Research Summit. This initiative identified key research priorities in the inheritable blood disorders community. The NRB will consist of one- and five-year strategic plans that will address these priorities and outline roles and responsibilities for everyone involved in research. The goal is to steadily advance standards of care for people with IBDs through basic, translational, and clinical research, as well as meaningful advocacy efforts and productive community education. In addition to the NRB workshops, our staff had the opportunity to come together, in person, for the first time since 2019. We reconnected with colleagues and laid out plans for 2023 and 2024 which will move us closer to our vision of creating a world without inheritable blood disorders. We cannot achieve this without your help. Thank you for your partnership. Have a question? My inbox is always open. I look forward to hearing from you. With gratitude, Brett Spitale VP of Advancement
Lessons learned from Ziva Mann, NHF board member and advocate Washington Days Recap On March 2nd, 340 advocates from 43 states participated in 265 legislative visits as part of our Washington Days event. This yearly event is an opportunity for individuals living with an inheritable blood and bleeding disorder to share their personal story and advocate for support of federal hemophilia programs. And this year was more important than ever. Recently, insurers have created health plan strategies that are creating barriers to access for patients with rare or chronic disorders. These copay accumulator adjuster programs are harmful toward an individual’s deductible or out-of-pocket maximum, putting additional and unnecessary costs on individuals and families like yours. But thankfully, we have identified a legislative solution. Our advocates raised their voices to help NHF address this problem and make the bill become federal law.
Lessons from today’s #NHFWD advocacy day: start by listening. I thought I knew bleeding disorders - and was I ever wrong. Every member of our team carried a whole universe of stories. 1. It’s easy to dismiss something as ‘just how it is,’ and miss the strength that it can take to live a life with challenges. I’m humbled by what people can carry through their day, and the grace with which they do it. 2. Our team had people of a range of ages, backgrounds, geographies, contexts. And we all chose to be present, to share our community’s challenges and needs. 3. It is so hard to be that vulnerable. To be that honest. To share the raw edged parts of your life, we must admit that they are there. The pain. The fears. The struggles. And yes, the triumphs. 4. Two things make it possible: 1. coming together with others for a shared purpose, each of us bringing our own experiences and truths. Knowing it takes all those perspectives - and more - to begin to understand our community. AND 2. talking to legislators who came to Congress to serve the people they represent. Who value their staff taking time to listen, learn and connect. Their care makes it possible for us to speak. Their listening teaches us that we matter.
Help Us
Carry On Let's Make Plans Many of us are thinking about our financial future in this time of countless unknowns. As a generous supporter, we want to extend a financial wellness resource to you, in the hopes that it helps you complete an important financial task from your desk at home: a free, online will-writing tool. Everyone needs a will, and thanks to our partnership with FreeWill, we’re excited to offer you this resource, for free, so that you can best protect the people and causes you love. With this easy tool, you can write your legal will in under 20 minutes. Get started today. If you have questions or would like to request more information about NHF’s planned giving program, please reach out to Maureen Parsons, Director of Individual Giving at mparsons@hemophilia.org.
Did you see the news? It’s been a busy start to 2022 for NHF and the community. Check out the latest news updates! Alex Borstein: 25 Things You Don’t Know About Me: Longtime community member and star of Amazon Prime’s hit comedy “The Marvelous Mrs. Maisel” sat down with Us Weekly and gave some special shoutouts to NHF and our community. Check out the article! Don’t miss facts 6, 8, and 9. Hemophilia in the Romanov Family: Our global community comes together each year on April 17th to celebrate World Hemophilia Day. This year, NHF sat down with historian Dr. Helen Rappaport to learn more about how hemophilia impacted the Romanov family, and its lasting impact on world history. Read the interview transcript or watch the video recording. Rural Health Leadership Radio with Dr. Valentino: Many patients living in rural America encounter unique boundaries to receiving the critical healthcare they need, particularly when faced with a rare disorder or disease. Listen to how Dr. Len Valentino is working to educate and advocate for upwards of 10,000 rural Americans living with a rare blood or bleeding disorder.
NHF GO! Throughout the month of March, NHF GO's Run Red event brought together nearly 80 participants from all over the country in celebration of Bleeding Disorders Awareness Month. Participants ran, walked, and cycled distances ranging from a 5K to a full marathon. In just 31 days, we were able to raise $15,500 for the inheritable blood and bleeding disorders community! Gratitude and thanks to everyone who participated, donated, and supported-we would not have been able to do it without you.
Also in March, 10 runners from across the U.S. represented NHF in the 2022 United Airlines New York City Half Marathon. Our athletes laced up their sneakers and ran 13.1 miles through Brooklyn and Manhattan to raise awareness and funds for the inheritable blood and bleeding disorders community. With their combined efforts, the Red Tie Runners were able to exceed our goal of $15,000 by raising $32,000! Thank you to these incredible runners for their months of training, fundraising, and dedication to this cause.
INTERESTED IN RUNNING WITH US? We have a spot for you in the 2022 TCS New York City Marathon! Email Riley Breen, Development Specialist, at rbreen@hemophilia.org to learn about this event and other endurance opportunities!
Hemophilia Alliance: Education Update 1st Annual Hemophilia Alliance Pharmacist CE Conference The 1st Annual Hemophilia Alliance Pharmacist CE Conference was held in San Diego at the end of January 2022. The program was offered to pharmacists of HTCs across the country and offered an inperson and virtual option for attendees. The goal of the program was to expand the pharmacist’s understanding and awareness of the latest treatment options. The faculty are thought leaders in their space and included: Steven Pipe, MD, Robert Sidonio, MD, Kim Mauer, MD, Sonia Nasr, PHD, Carol Johnstone, MA, Duc “Bobby” Tran, MD, Maissaa Janbain, MD, Angela Kellum, PharmD, Nicole Reynaud, RN, Jennifer Maahs, PNP, and Regina Butler, RN BC. The conference was a wonderful experience for everyone and far exceeded expectations. Better still, it armed the attendees with a deeper understanding on the most effective means to treat a broad range of bleeding disorders. The program is available online to pharmacists, who have occasion to be part of a clinical care team, that only occasionally see people with bleeding disorders. Think rural hospitals and emergency rooms. Pharmacists can be an important part of making sure a patient gets the appropriate care in a timely manner. We plan to host the meeting again in 2023. This would not be possible without the support of the HTC community and the committee members: Stevan Mizamakoski, RPh, Angela Kellum and Resham Sahijram for volunteering their time and expertise to assist in planning the event.
The Linda Gammage Social Work Conference The 24th annual Linda Gammage Social Work Conference was held in Nashville in late February 2022. The in-person conference was attended by thirty-five social workers who work in HTCs across the United States. For the first time we were able to offer a virtual option for those who were not able to join us in person. The goal of the conference is to help social workers from around the country come together to network and learn about the latest thinking in treating a wide range of psychosocial issues. Renee Jennings, MA, LCSW presented for a day and a half on “Transforming Trauma Through Somatic and Energy-Based Interventions: An Integrative Approach.” Renee is a therapist in private practice in Philadelphia, PA. Certainly we are all traumatized after the last three years. The social workers left with an enhanced understanding of how to help the bleeding disorders community. Thanks also to the hard work of the planning committee who meets throughout the year to plan this event: David Rushlow, Colleen Joiner, Amy Wilson, Jennifer Borrillo, Eric Iglewski, and Kathaleen Schnur. We are already planning the 25th conference which will be held in April 2023 and hope to see many of the social workers there.
DDAVP Nasal Spray (NS) Finally, we are coming up on the oneyear anniversary of the bleeding disorders community coming together to bring DDAVP NS to market. Hundreds of mild to moderate type A and type 1 VWD patients have benefited from having the product available. If you have any questions or would like more information email us at info@hemoalliance.org
The YOUNG HOPE SOCIETY Inspiring the next generation of community activists.
Are you a young adult looking for ways to grow your professional network while gaining the skills to become a philanthropic leader? Join NHF’s Young Hope Society (YHS) – a young professionals group for individuals between the ages of 21-40 who want to support the inheritable blood disorders community alongside their peers. It is free to join and all are welcome. Ready to get started? Sign up today.
As a member, you’ll have access to exclusive online events, including professional development workshops and a Speaker Series to hear from dynamic leaders in a variety of career backgrounds. You can support the community in a way that is meaningful to you, through volunteering, fundraising and advocating for our community.
Questions? Contact Maureen Parsons, Director of Individual Giving, at mparsons@hemophilia.org.
Upcoming Events We hope you will join us at an upcoming event – either in person or virtual!
Weekly Wednesday Webinar: NHF's Wednesday Webinars are a free education series open to providers and community members. Register to attend and learn about the latest in research, breakthrough developments, and more.
NHF GO’s Run, White & Blue (June 4th-July 4th): Run, walk, or bike in celebration of our community. Grab your friends and family and participate at your own pace, any place, any time leading up to the 4th of July. Family Fun Run, Walk, and Bike options available. Registration coming soon. Want to host a Run, White and Blue in your community? Email nhfgo@hemophilia.org.
Bleeding Disorders Conference (August 25th-27th): Join your community at the 74th Annual Bleeding Disorders Conference (BDC) this summer in Houston, Texas! You’ll be able to reconnect with your community, learn in sessions designed just for you, and more. For those unable to travel, the conference also features a virtual registration option. Register today!