NHF February 2021 Donor Digest

February 2021

Donor Digest In this Issue:

Looking Ahead Wednesday Webinars The Life and Legacy of Jason Fulton

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Persepctive fr Reflections with Board Member Mark Borreliz Remembering Loved Ones Request a 2020 Gift Summary Bleeding Disorders Awareness Month Monthly Donors Make a Difference

Looking Ahead

A perspective from NHF's President and CEO Leonard A. Valentino, MD This past year, tumultuous and strange as it was, has taught us all some lessons that will guide me, NHF, and the bleeding disorders community in the years ahead.

The first lesson is how important it is to be in regular communication with you. In 2021, we will continue to answer your questions, guide you to resources, and share important updates through our weekly webinar series each Wednesday.

The second lesson is that listening to you, our community members, is more critical than ever.

Gene therapy and nonfactor therapies are changing our understanding of what it means to live with a bleeding disorder. It is our responsibility at NHF to make sure that you—the people who live with bleeding disorders and your family members—are involved every step of the way. NHF is using research to resolve the gaps in the care you experience. Currently, working groups are meeting to discuss, debate, and plan the direction of

research, culminating in a State of the Science Summit this September. Look for future news about how you can get involved in this effort.

The third and most important lesson 2020 provided me is that it is imperative that we expand our reach within the bleeding disorders community. We must guarantee that people of all races and ethnicities; people from underserved areas; those who cannot afford medication and services; and women with bleeding disorders have equal access to treatment, are included in research, are represented in our chapters, and that their concerns and needs are heard and acted upon. It’s time, too, that we embrace our friends with rare blood disorders, like sickle cell disease and thalassemia, who are treated at hemophilia treatment centers yet are not part of our community.

We have a vision of a world without inheritable bleeding disorders.

We have a vision of a world without inheritable blood disorders.

We are restructuring our mission to meet this goal: finding cures for inheritable blood disorders and addressing and preventing complications through research, education, and advocacy, enabling people to thrive. Together, with open communication and inclusive research, we can make our vision and mission realities. Come along with us on this journey—together, we are stronger, and together, we have a louder voice!

Peace and prosperity, Leonard A. Valentino, MD

Upcoming Wednesday Webinar NHF's Wednesday Webinars for February 2021 will feature an array of speakers and topics of interest to healthcare providers, patients, and families with blood disorders alike. To register please click here.

February 24, 2021 AI and Life Sciences: State of Affairs in 2021 Speaker: Vicar Sayeedi, Managing Director, Synthetic Intelligence, LLC

The Life and Legacy of Jason Fulton

Karen Fulton Holine knew that her son’s life could inspire generations of young leaders.

“From his early toddler days in a padded helmet; to shin guards on the soccer field; to ankle braces for tennis, basketball, and snow skiing, Jason was a courageous champion for change and a model youth leader in our hemophilia community,” shared Karen. “He had the best sense of humor with contagious smiles and laughter. Everyone loved being around Jason, no matter what they were doing together.”

So, with the support of her dear friend Leah, Karen welcomed the opportunity to establish the Jason Fulton Memorial Leadership Fund with NHF, benefitting the National Youth Leadership Institute (NYLI).

Smart and driven, Jason focused on what he could do with his life, rather than the limitations he faced. Jason viewed his hemophilia as a competitor, a rival to be beaten, much like the athletes he encountered on the tennis court. Jason was a huge sports fan and statistician. Traditional contact sports were dangerous for Jason, who couldn’t stray far from the cold storage housing his lifesaving cryoprecipitate. Thus, he would slip into a wheelchair while Karen was directing wheelchair sports programs and challenge others to matches.

He became so good, in fact, that he placed second in the Junior Division at the National Wheelchair Tennis Championships and was featured in their publications.

When Jason was a toddler, Karen returned to Fresno State University as a student while advocating with fellow parents for a satellite treatment center at the local children’s hospital.

Eventually, Jason’s social worker there introduced them to Ron Adams, the coach of the Fresno State basketball team, and his wife, Leah, their academic advisor. The couple invited him to help with basketball camps, and so impressed were they with his work ethic and commitment to the players, they named him an honorary manager of the team when he was just in high school.

Jason focused on what he could do with his life, rather than the limitations he faced.

“With his crinkly-eyed smile, Jason’s love of life brought joy to everyone around him,” Leah told NHF. “We loved him from the moment he walked into our lives. Ron and I marveled at how he coped with all that life had thrown him, and we learned as much or more from him as he did from us. His dedication inspired all of us, but especially the players, who quickly befriended him. He loved Fresno State basketball, and once he was a Fresno State student, he became a fixture in the basketball office, volunteering even after Ron left to coach in the NBA. Jason was a loyal fan—he cheered for Ron’s NBA teamsbut only if they weren’t playing against his beloved LA Lakers. He and I, however, were forever bound by our mutual love for the LA Dodgers; he even chose to be buried wearing his Dodgers hat.

That first summer he was with us, we ‘adopted’ him as one of our kids, and we still miss him each and every day."

We learned as much or more from him as he did from us.

Eventually, Jason discovered the blood products he had taken proactively to treat his hemophilia had also infected him with HIV. Jason sized up this new competitor, this tragedy that could break anyone, and dared it to stand in his way. While pursuing his post-graduate goals in pediatric hematology and pharmacology and working at a pharmacy to distribute factor, he also coached athletes with disabilities and mentored children wishing to live well with hemophilia. He fell in love, married, got a dog, and even bought a house. When he was too ill to turn in his college assignments, Karen hand-delivered them to his professors.

Sadly, at age 24, just before graduating college, Jason passed away. Having reviewed his transcripts at Karen’s request, the college administration determined that, even as Jason contended with a fatal illness, he had completed all the coursework required for his degree. Jason’s robust life sparked an ongoing testimony, permanently shaping Karen, his sister Ursula, Leah, and many others who speak of his influence to this day.

In 2017, Karen and her family had Jason’s name engraved in both the National AIDS Memorial Grove Circle of Friends and the

Hemophilia Memorial in Golden Gate Park in San Francisco. It was there that Karen reconnected with NHF. "I have been truly blessed to be surrounded by such thoughtful and caring people at both NHF and the Hemophilia Memorial as we come together to honor Jason's life," said Karen. They understand the lifetime heartache of losing my son, tolerate a few tears, and give me the strength to tell Jason's story. Jason's perseverance inspired my career in Non-Profit Administration and my Master's Degree in Leadership, so I could not be more grateful for the chance to create a legacy in his name to benefit future generations."

The Jason Fulton Memorial Leadership Fund is designed to inspire generations of NYLI cohorts. During this rigorous two-year program, young adults affected by bleeding disorders refine their personal and professional skills through immersive opportunities at both chapter and national levels.

Through this fund, Jason’s vibrancy as an inspirational leader lives on, and each NYLI participant will carry a bit of Jason with them forever.

“Jason was a humble but determined young leader. He had goals, dates, and deadlines, and nearly achieved them all in his brief life. If Jason were alive today and an NYLI member, he would be incredibly appreciative, work extra hard, and encourage his cohort to make the most of their time and relationship building. It is a most welcome and timely career development experience when one can come together for the mutual purpose of effecting a lasting change for life and community,” Karen remarked.

NHF is honored to share in Jason’s memory. If you’d like to make an impact on the lives of future leaders while remembering an incredible young man, please donate here.

More information about NYLI can be found here.

Mark Borreliz, a former Board Member, reflects on his involvement.

After seven years of service, Mark Borreliz is stepping down from the NHF Board of Directors. It wasn’t until Mark, who’d been diagnosed with severe hemophilia A in the 1950s, was in college that he learned about the bleeding disorders community. After serving on the board of the New England Hemophilia Association and with 30 years of experience practicing health regulatory law, Mark ran for a seat on the NHF board. Below, Mark reflects on the progress made for people with inheritable bleeding disorders and the qualities he believes leaders need to make a difference.

How was your experience growing up with hemophilia different than it is for young people now?

Whole blood and fresh frozen plasma were the only “replacement” therapies in the 1950s, and they were a last resort.

Most of the time, a joint bleed was managed at home with cold packs and weeks of waiting for the bleeding and pain to resolve.

I missed a couple months of school most years, and my physical activities were ridiculously limited—no sports or P.E. and little outdoor play with my friends.

Today, I don’t know which is a greater source of wonderment for me—the many treatment advances that have come along over the years, or the fact that, as a result, most kids with hemophilia can be kids in the fullest sense, aspire to athleticism, and grow up with a healthy sense of self.

When you were growing up, did you know anyone else who had a bleeding disorder?

When I was 11 or 12, I met another child with hemophilia. He and I happened to be hospitalized at the same time in a large U.S. Army medical center serving military installations in Germany.

(I grew up an Army brat, moving from base to base every two or three years.) The transiency of military life, rareness of hematologists at post dispensaries, and insulation from the civilian world all conspired to keep my parents and me from learning much about hemophilia, let alone the broader bleeding disorders community.

I don't know which is a greater source of wonderment for me: the treatment advances or that most kids with hemophilia can be kids in the fullest sense.

“

What was it like finally connecting with the bleeding disorders community?

It was not until I was attending college in Boston that I found out there were local organizations supporting people with bleeding disorders. I started attending New England Hemophilia Association (NEHA) events. I found it amazing to be part of a community of such supportive and mission-focused people and to find peers whose stories overlapped with mine.

Discovering others through the community was bittersweet, though, because I realized that my parents had needlessly borne in solitude the stresses and fears of raising a child with a bleeding disorder.

What are you proudest to have accomplished while on the NHF board?

I am proudest of having been part of a sustained effort to elevate NHF’s role in expanding research into bleeding disorders. Research has been part of NHF’s mission for a long time, and many great things have come about through initiatives like the Judith Graham Pool Fellowships. The Board, one of whose functions is to set NHF’s broad directions, saw a need and opportunity for NHF to play a still more prominent role. NHF has a phenomenal reserve of medico-scientific knowledge in MASAC, a wide range of external partners, and an engaged community from which to draw ideas and priorities. I’m thrilled to see Dr. Valentino tapping all of these to build a research agenda.

Do you have any words of advice for people who want to become leaders within the bleeding disorders community?

Three things. First, come with a genuine commitment to do the work. Second, take conflicts of interest seriously. Trust is an advocacy organization’s greatest asset. Consider whether your individual interests and affiliations, regardless of how you feel about their effect, could cause the community to question your fidelity to the community’s interests.

Finally, think big, and think big fast. Whether as a board director or in another leadership position, the chance to accomplish something passes quickly.

2020 Tribute Gifts Generous supporters remembered loved ones in the community with a gift in their memory. Those who were remembered are below.

Alan Taylor Hall Angela Rachel Mathew Ann and Ed Sullivan Ann Crowe Ann Sullivan Ann Taylor Anna Crea DelMasto Audrey C. Taylor, BSN, APN Audrey Taylor, BSN, APN Barry Haarde Ben Freedman Benjamin David Jessen Betty Abel Betty Buffum Betty Nix Bill Trethaway Bob Seifert Carol Blumenthal Carol McAndrews Chris Oxendine, Michael Locklear, and Lawrence Maybor Danny Crow David Gentry David Paul Mancuso David Scott Gentry Deborah Nuse Diane Prejean Brinkhaus Donald "Ziggy" Douglas Donald Glascock Dr. Mahnaz Tohid

Dr. Stuart Wertheimer Ed Vance Edward J. Becan, Jr. Edward P. Kirby, Ph.D. Erica Kohler Nesja Eve Bruschle Fran Walter George J. Eckbold Gloria Curtis Gloria Ruth Grindle Harry Zolotar Hugh Dryden Jack Walker James Crawford James L. Bartko James P. Gilbert Jean M. Rick Jeannie Adair Jeff Osborne John C. Bosch John Christian Bounds John Hunt, Sr. John T. O'Neill Julie Omer Quinn Kathy Johnson Lawrence Kotch Lee Amason Levi Huber Louis J. Amendola Maria Luisa Nodarse Marie L. Manocchio

Marilynn McDonald Whatley Mark Asbury Eichelberger Mark Kirk Marsha M. Meyer Mary Helen Askounis Mary Jane Carey Matthew Dana Palmer Mohamed Ahmed Bader Nate Slack Nu Luong Patricia Debelak Paul J. Zermeno Paula Guzzetti Peter Gabor Peter Richardson Philip R. Spinucci Raymond G. Pike, Jr. Richard Baxter, Sr. Rita R. Green Donlan Robert Jeffrey Jones Robert John Barish Ruthie and David Ryan Sims Sam Beard Tesoro Beltran Neirot Wesley Hurst William P. Tomczyk

Thank you We are grateful for your commitment to this community and stronger because of it.

2020 Summary of Donations The bleeding disorders community and NHF appreciate your support this past year.

Your gifts helped us make sure that, throughout multiple challenging situations, our community stayed connected to the resources they depend on. You also laid the groundwork for one of NHF’s most ambitious undertakings yet: a comprehensive, patient-centered research agenda.

If you’d like a summary of your 2020 contributions, please contact Candice Comisi at ccomisi@hemophilia.org

In 2016, thanks to NHF, March was officially designated as Bleeding Disorders Awareness Month.

Join us in this month-long celebration and recognition of our community. During Bleeding Disorders Awareness Month (BDAM), NHF invites members, friends, and supporters of the community to join us in raising critical awareness and funds to improve the lives of those affected. To learn more and get involved click here.

Monthly Donors Make a Difference Our Promise Partners make a sustainable impact by ensuring that those affected by blood disorders and their loved ones have the support, access to quality care, and resources they need. This allows NHF to deliver on its promise to serve every person in our community until we live in a world without blood disorders.

NHF wants to recognize our Promise Partners for their commitment to standing by the inheritable blood disorders community. Their monthly gift ensures our community members can continue to depend on NHF’s exceptional education and outreach programs; tireless patient advocacy; and pursuit of transformative research investigating cures for inheritable blood disorders. We are ready to embark on a life-changing next chapter for NHF because of the partnership of our generous monthly donors. Thank you for providing stable, reliable funding for the inheritable blood disorders community.

If you would like more information about the impact of monthly giving, click here.