2021 NHF Red Tie Soiree REUNITED Journal

REUNITED

A renewed mission and focus on research, as we come together and unite to celebrate the inheritable blood disorders community.

OCTOBER 16, 2021 Presented by:

LETTER FROM THE CEO Good evening, friend, Welcome to the 2021 Red Tie Soiree, hosted by the National Hemophilia Foundation. Thank you for tuning in!

We hope you enjoy a fun and meaningful night ahead.

NHF’s continued growth, success, and increased emphasis on research is only possible with your support. This evening’s Soiree and the stories you’ll hear are just another example of what we can achieve, together. With your continued passion for our shared mission, we can fuel even more research breakthroughs and community care than ever before.

Tonight is a celebration of the past, present, and the future, of inspiration and hope. Even as we come together virtually for another year and continue to face daunting public health threats due the pandemic, this community still moves toward unprecedented progress, a future of accessible and equitable treatments and care, and novel technologies and research.

Your presence here tonight signifies that you believe that improving health is a crucial part of making the world a better place. Thank YOU for standing alongside NHF in educating, empowering, and engaging the current and next generation of this community. Tonight, we gather to inspire, connect, and invest in our shared future.

Thank you for being here, Dr. Leonard A. Valentino NHF President & CEO P.S. Don’t forget to bid on the silent auction or share on social media with the hashtag #RedTieSoiree!

PROGRAM FOR THE EVENING Thank you for joining us for the RED TIE SOIREE: REUNITED 7:00pm EDT/4:00pm PDT: Pre-Show Event 7:15pm EDT/4:15pm PDT: Red Tie Soiree: Reunited 9:00pm EDT/6:00pm PDT: Silent Auction closes* Also streaming on Facebook:

https://www.facebook.com/NationalHemophiliaFoundation/

*Silent Auction closes Saturday, October 16th at 9:00 pm EDT/6:00pm PDT.

THANK YOU TO OUR PARTNERS PRESENTING VISIONARY

HERO

LEADER

THANK YOU TO OUR PARTNERS ADVOCATE

FRIEND Schaner & Lubitz Scott E. Miller, CPA, Attorney of Law

WATCH PARTY SILENT AUCTION

THANK YOU TO OUR PARTNERS RED TIE SOCIETY MEMBERS SUPPORTING THE SOIREE

ABOUT NHF The National Hemophilia Foundation (NHF) is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive.

Established in 1948, NHF supports a network of 52 chapters across the country. We have given more than 22 million dollars to blood disorders research. We provide education and support to countless families with bleeding disorders, seek to find undiagnosed women with blood disorders, and work tirelessly to protect access to healthcare on the state and local level.

ADVANCING MEDICAL KNOWLEDGE AND SCIENTIFIC RESEARCH NHF continues to fund innovative research aimed at finding better treatments and cures for inheritable blood disorders. This research has led to a deeper understanding of hemophilia and other blood disorders, vital insights into improved therapies and more accurate diagnostic methods.

CVR: Community Voices in Research, a registry for patients and families will help us understand what it means to live with an inheritable blood disorder from the perspective of affected individuals and their immediate family members.

NHF’s Medical and Scientific Advisory Council (MASAC), an internationally respected group of scientists, physicians, and other treatment specialists, issues quality of care and treatment recommendations for bleeding disorders and other related conditions.

CREATING A NATIONAL RESEARCH BLUEPRINT

NHF has taken the lead on a community-driven journey to shape the future of research for blood disorders. Our goal is to establish a clear understanding of the most pressing issues challenging people and families with blood disorders. This broad effort aims to bring the experiences of people who live with blood disorders to the forefront of transformational research and examine where research can have the most community impact.

NHF held a State of the Science Research Summit in September that brought together voices from across our community to address some of the most pressing issues faced by people with these disorders, and to agree on specific and actionable activities that will shape the National Research Blueprint.

Public Policy Initiatives NHF supports increased federal research funding for better treatments of all inheritable blood disorders. In addition, our public policy agenda includes working for improved access to highquality medical care, a safe and reliable blood supply, access to a full range of safe and effective treatment, adequate reimbursement at the public and private levels, and expanded federal funding for hemophilia treatment centers (HTCs). Our federal policy priorities are shared with Congressional leaders each year during Washington Days, where hundreds of volunteer advocates come together to share their stories with legislatures. We also support robust advocacy activities at the state and local levels through a variety of channels, including the State Based Advocacy Coalition.

EDUCATION PROGRAMS

Our broad range of in-person and online programs and services include: Steps for Living Better You Know and Victory for Women Von Willebrand Disease Mental Health National Youth Leadership Institute (NYLI) Bilingual Education Guía Culturales Rare Bleeding Disorders Gene and Innovative Therapies Education

CHAPTER

SERVICES

NHF’s Chapter Services team provides resources, trainings, and

support in all areas of nonprofit operations

for its network of chapters across the country, including the UNITE for Bleeding Disorders Walk program.

Through fundraising support, board and volunteer trainings, program assistance and leadership development programs, NHF is helping chapters increase their capacity to better serve their local communities.

NHF BOARD OF DIRECTORS Scott Miller, JD, DBA - Chair

Scott Martin - Vice Chair

Lynne Capretto - Secretary

Ryan Griffith - Treasurer

Brian Andrew

Derick Stace-Naughton

James Heer

John Faria

Kai Brown

Maria Eileen San Juan

Patrick Mancini

Paulette Bryant, MD

Susan Hartmann

Ziva Mann

Ali Haidar - NYLI Rep

Steven W. Pipe, MD - MASAC Chair

Leonard Valentino, MD - President and CEO

YOUR GIFTS AT WORK NICOLE “Before I became involved with NHF, I felt like no one was listening to me.”

At 16, Nicole was diagnosed with VWD. Four years later, doctors told her that to control her menstrual bleeds, she would need to have either a hysterectomy or baby right away. Already, her nosebleeds had prompted her college housing property managers to request that she find other living arrangements, citing the cost attached to cleaning up after each episode.

Her college career cut short, Nicole spent three years in and out of the hospital for treatment but had no steady team or medication schedule.

Then, she found NHF and the resources made available each year at the Bleeding Disorders Conference. Introduced to a hematologist, Nicole learned that she could treat her bleeds by infusing—a method that hadn’t before been considered and one that improved her symptoms immensely.

“I found my voice within the community,” said Nicole. “I share my story with young girls so that they can receive the care I didn’t.”

YOUR GIFTS AT WORK ESMERALDA Despite living near three hemophilia treatment centers (HTCs), Esmeralda wasn’t referred to one for treatment of her Glanzmann thrombasthenia (GT) for years. In the time that passed, her doctors had told her it was unsafe for her to have her wisdom teeth removed or to have a baby—and some of the doctors who treated her didn’t even know what a bleeding disorder was.

So, when Esmeralda finally met Dr. Valentino in his role as hematologist at the Rush University HTC, the connection changed her life.

Dedicated to improving conditions for minority populations, Esmeralda recently served as a subject matter expert for the NHF’s 2021 State of the Science Research Summit, challenging the community to remove the barriers that keep minority populations from accessing equitable care and to increase awareness of inheritable blood disorders among providers everywhere.

YOUR GIFTS AT WORK MATT “This kid bleeds a lot,” Matthew’s doctors remarked as they treated his recurring nosebleeds.

Many bleeds, bruises, and joint issues later, Matthew—and his mom and sister, too—was tested for VWD. And each result was positive. Still, many of his providers, especially in the ER, had never encountered VWD. Until he was connected to providers in the hematology department, Matthew spent his early years cooped up in hospital rooms instead of playing with friends and family—something that a timelier VWD diagnosis and treatment plan could have prevented.

“I felt alone, like I couldn’t live a ‘normal’ life,” said Matthew.

Committed to helping others in the community avoid similar scenarios, NHF, along the American Society of Hematology, the International Society on Thrombosis and Hemostasis, and the World Federation of Hemophilia, and patient representatives, recently issued the Guideline Recommendations for Diagnosis and Management of VWD. These Guidelines standardize care that is thorough, practical, and patient-friendly so that people like Matthew can live the lives they want sooner.