April Donor Digest

April 2021

Donor Digest In this Issue:

A Refocused Mission Driving Research Forward A Board for the Community A Space for Young Professionals Wednesday Webinars Help Us Carry On Run Red Super Seven

A Refocused Mission At NHF, we’ve refocused our mission, emphasizing research and expanding its scope: The mission of the National Hemophilia Foundation 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.

“We have a vision of a world without inheritable blood disorders,” said Dr. Valentino.

Plans are underway to accelerate research. In September, our State of the Science Summit will bring together researchers, clinicians, industry partners, government agencies, and affected individuals and families to create a national research blueprint that shapes the future of this community. We also announced the Jeanne M. Lusher Research Diversity Fellowship, designed to encourage a career-long interest in benign hematology among Black, indigenous, and people of color (BIPOC) clinicians and researchers.

This renewed focus on research, says Dr. Valentino, makes both the community and NHF stronger. “What we learn from research will help us create more effective educational programs and give us validated information we can use to advocate for access to care.”

And now, NHF's mission includes patients with all inheritable blood disorders.

“At HTCs, we’re seeing patients with sickle cell disease, thalassemia, thrombocytopenia, and more,” said Dr. Valentino. “Not all of these people have advocacy organizations that offer them robust resources. And if they do, NHF can partner with the organizations in ways that align with our mission, vision, and values.”

We have a vision of a world without inheritable blood

Still, we will remain just as focused as ever on serving people with bleeding disorders like hemophilia and von Willebrand disease (VWD).

disorders.

Says Dr. Valentino, “People and families affected by blood disorders are at the center of everything NHF does. All of our programs, advocacy, and research initiatives truly strive towards one goal: allowing people and families to thrive.”

WATCH WHY DAWN NHF'S

THIS VIDEO TO LEARN DR. VALENTINO AND ROTELLINI CHAMPION REFOCUSED MISSION.

Donor Advised Funds Donor-advised funds (DAFs) are an increasingly popular way to donate to the causes most important to you—and they are a tax-efficient way to manage your charitable donations. When you give through a donor-advised fund, you receive an immediate tax deduction and the ability to recommend grants from the fund over time.

Donors who have DAFs can easily designate their funds to NHF’s research, advocacy, education, or greatest needs initiatives. Best of all, 100% of your approved grant recommendation will go to support NHF’s work with the inheritable blood disorders community.

For more information, please contact James Uyeda at: 646.734.7560 or juyeda@hemophilia.org.

Driving Research Forward NHF Bridge Award recipient and hematologist Dr. Janice Staber has dedicated her career to understanding the connections between inheritable blood disorders and mental health.

“A few years into my work, I realized that my patients had higher rates of mental health disorders than I had anticipated,” Dr. Staber shared with NHF. Dr. Staber wanted to explore this link, so she submitted an application to the National Institutes of Health (NIH). If the NIH accepted her proposal, Dr. Staber would receive access to funding and resources she needed to fully investigate this issue.

Even though the NIH was interested in her project, they needed more information before they would commit to funding it.

That’s when Dr. Staber applied for the Bridge Award at NHF—an important resource that support like yours makes possible.

Successful applicants receive $125,000 over the course of one year to strengthen proposals they want to resubmit to the NIH. “The NHF Bridge Award provided funding for preliminary studies and the time necessary to address the NIH reviewers’ questions and concerns prior to resubmission,” said Dr. Staber.

The findings Dr. Staber made using the NHF Bridge Award led to the NIH awarding her the prestigious R01 award when she next applied. And the inheritable blood disorders community will be greatly impacted by her research.

“Our research will improve the understanding of anxiety, depression, and mental health disorders in hemophilia patients which may help in earlier screening, detection, and treatment,” said Dr. Staber. “The long-term goal of my research is to improve treatment and outcomes for people with hemophilia—including mental health and neurocognitive outcomes.”

The Bridge Award is just one of several research awards offered to hematologists. Others include:

Our research will improve the understanding of anxiety, depression, and mental health disorders in hemophilia patients

the Judith Graham Pool Postdoctoral Research Fellowship; the Innovative Investigator Research Award; and the Jeanne Marie Lusher Diversity Fellowship. Through these opportunities, researchers are making vital contributions to our understanding of inheritable blood disorders— and how we can achieve a world without them.

You can support the work of hematologists like Dr. Staber by directing a gift to research here.

A Board for the Community

Expanding our reach and engagement will allow us to increase

The inheritable blood disorders community requires a board of directors that reflects its diversity. In December 2020, NHF welcomed three outstanding board members: Paulette Charese Bryant, MD, FAAP; Maria Eileen V. San Juan, MSPT; and Kai Brown, MBA. Recently, we sat down with Kai and Paulette to learn why the inheritable blood disorders community is important to them and what they wish to achieve during their terms.

education, better understand and address the needs of our community, and close gaps in care.

WHY INHERITABLE BLOOD DISORDERS? Kai: For the majority of my career, first as a biologist and now a strategist with Bristol Myers Squibb, I’ve focused on positively impacting patient lives. A former employer of mine worked with blood thinners and coagulation, and there, I developed a deep passion for bleeding disorders and educating healthcare providers and patients on affordable treatments.

Paulette: I was born in Hampton, VA, during a time of segregation. When I attended Harvard Medical School to pursue hematology and oncology, I was one of four African American women in a class of over 100 students. Since graduating, I’ve worked for Stanford University and the Navy, where I started the Children’s Oncology Group and a hemophilia clinic, and also obtained the rank of Captain before retirement. Now, I co-lead a hematology-oncology practice in Memphis, TN, and run a hemophilia treatment center in Charlotte, NC.

WHY DID YOU RUN FOR NHF'S BOARD? Kai: Using my professional and leadership skill sets, I want to support the advancement of science and research around inheritable blood disorders. I also wanted to do more help elevate patient voices, support communities, and drive diversity and inclusivity.

Paulette: I want to reflect my community’s concerns. Specifically, I want to help NHF become more inclusive by representing voices that are often not the loudest—like those of small HTCs, patients and caregivers of color, and women with bleeding disorders.

HOW CAN WE BEST SERVE PEOPLE AFFECTED

BY INHERITABLE BLOOD DISORDERS? Kai: Expanding our reach and engagement. This will in turn allow us to increase education, better understand and address the needs of our community, and close gaps in care. Take the 2020 Virtual Bleeding Disorders Conference—it had the highest attendance of any conference ever. Schedules and budgets can exclude our population from attending these vital events, but the virtual platform makes them more accessible. We must make education accessible.

Paulette: More education for hospital systems and providers; for insurance providers; and for women and families to identify issues and develop treatment plans sooner. We also need more research into how inheritable blood disorders change as you age, and into affordable treatments—ideally, a cure—with minimum side effects.

I want to help NHF become more inclusive by representing voices that are often not the loudest--like those of small HTCs, patients and caregivers of color, and women with bleeding disorders.

YOU CAN LEARN MORE ABOUT EACH OF NHF'S BOARD MEMBERS HERE.

A Space for Young Professionals The Young Hope Society (YHS) consists of a diverse group of professionals between the ages of 21 and 40 aiming to make an impact through volunteer opportunities, philanthropic initiatives, and networking opportunities. NHF hosted a YHS Speaker Series at the end of February with Randi Clites. As a former member of the Ohio House of Representatives, Randi is a proven leader and a tireless advocate for the bleeding disorders community. She shared her story and engaged YHS members in a discussion about being a self-advocate, pursuing your passions, and trusting the journey.

In April, YHS members will have the opportunity to hear from Michael Craciunoiu, NHF Vice President of Chapter Services.

Michael is a Professional Certified Coach who has led workshops, small group retreats, and one-on-one coaching sessions for nonprofit leaders throughout the country. In this interactive session, YHS members will discuss with their peers how to effectively navigate conversations and leverage relationships in the workplace by exploring a case study of a challenging situation between two colleagues.

The Young Hope Society is open to all young professionals and free to join. For more information, click here.

The Young Hope Society is open to young adults who want to support the inheritable blood disorders community!

Upcoming Wednesday Webinars April 21 2:00PM EST WFH Gene Therapy Registry Speakers: Glenn Pierce, MD, PhD, Vice President, Medical, WFH, and Donna Coffin, MSc, Head of Research, WFH April 28 2:00PM EST HTC Patient Satisfaction Survey Speakers: Judith R. Baker, DrPH, MHSA; Brenda Riske, MS, MBA, MPA REGISTER HERE.

Help Us Carry On

Recently, a number of our friends in the inheritable blood disorders community have asked how they can be a lasting part of our commitment to finding better treatment and cures.

Many donors have found that, as the world changes, non-cash gifts are a great opportunity impact generations years to come without affecting your cash We toare grateful forforyour commitment to this flow now.

community and stronger because of it.

One way to do this is through a planned gift, such as naming NHF as the beneficiary of your will or trust. You can do this easily by adding simple language (found at the link below) to your plans. If you haven’t yet created a will, Free Will can help you get started.

By making plans to support NHF now, you help us fulfill our promise to offer research, education, and advocacy opportunities to those we serve. With you, we can continue to find treatments and cures that will change lives forever.

LET'S MAKE PLANS To explore your options or share your intentions, visit plannedgiving.hemophilia.org/give or email plannedgiving@hemophilia.org.

This March, more than 70 athletes from across the U.S. got moving for Run Red, NHF's fully virtual event to celebrate Bleeding Disorders Awareness Month.

Run Red marked the first event in our new endurance program, NHF GO, which encourages athletes to work out in support of the inheritable blood disorders community.

Within one month, Run Red participants could walk, run, or jog in any of four distance offerings: 5K, Half, Marathon, and Family Fun Run/Walk.

And even though runners aren't required to fundraise, those who chose to brought in $13,000 in just 31 days--dollars that will support NHF's mission.

NHF is grateful to all our valued Run Red participants, donors, and supporters. We appreciate you!

RUN RED ATHLETES JOINED FROM LOCATIONS ACROSS THE UNITED STATES!

Activity into Action A peek at how Run Red participants made their miles count during Bleeding Disorders Awareness Month

4,795

8

miles run or walked

half marathon participants

20

18

5K participants

family teams

22

31

marathon participants

states

225

donations made

$12,554 raised

What is NHF GO? NHF GO is the National Hemophilia Foundation’s endurance and events program, open to athletes of any fitness level who want to GO get active for our cause.

Whether you run, swim, climb, ride, or tri—make your miles and movements more meaningful by creating or signing up for a NHF GO event.

As we roll out this new program, we'd love to partner with local races and events around the country to raise awareness of bleeding disorders. To submit an idea for a future or event or to nominate NHF as a partner charity in a local event near you, please email Diana Perrault at dperrault@hemophilia.org.

In Case You Missed It: Super Seven Did you catch Dr. Valentino reading the first chapter of NHF’s new book Super Seven?

A book for boys and girls with very rare bleeding disorders, Super Seven focuses on Tanner, who refuses to let his diagnosis stand in the way of his love of basketball.

Relive the launch party here with Superbowl Champion Josh Gordy and others! Be sure to follow and subscribe to NHF's YouTube Channel to watch others read chapters from Super Seven.

She Puts the Super in Super Seven Nikole Scappe, coauthor of NHF's book Super Seven shares her motivation behind the project. "I wanted to write this book so children with ultra-rare bleeding disorders would have a story just for them and their caregivers. There are minimal resources for the rarest of the rare, and I was determined to create something just for them."

People with ultra-rare bleeding disorders--some of them affect only one in a million people--deal with a variety of physical, mental, and emotional challenges.

Nikole is also utilizing NHF's DIY fundraising platform Unite Your Way to raise additional funds to support the rare community. To support her efforts, click here.