NHF Donor Digest September/October 2021

September/October 2021

In this Issue:

A Party with Purpose: The Red Tie Soiree The NYLI Interns: Meet the Next Generation of Leaders Community Spotlight: BioMarin Future Gifts: Planned Giving

T h e

R e d

Empowerment: A New Series

S o i r e e

A Party with Purpose

presented by Sanofi Genzyme

It's not too late to RSVP to the Red Tie Soiree on Oct. 16 at 7pm EST. This year's virtual Soiree is about being reunited. Unite with NHF and the inheritable blood disorders community as we celebrate our renewed mission and focus on research. During this evening of camaraderie, virtually mingle with old friends and new while helping us raise funds needed to drive forward the next decade of NHF's work.

During this livestreamed, online event, community members will share their stories, NHF will share its vision, and you'll have the opportunity to make a gift that directly impacts those we serve.

How

Education for

T i e

can

Table Captain With NHF's help, create a personalized virtual table for your friends + family to gather round. There, you'll share why this community matters to you--and how their support can guide us to a world without inheritable blood disorders. And for each milestone that you hit, you'll receive a fun prize. Sign up here!

you

participate?

Silent Auction When you register for the Soiree, you could win a virtual meet-and-greet with Alex Borstein of The Marvelous Mrs. Maisel; custom NHF shoes; or dinner for four whipped up by NHF's very own President, CEO, and inhouse chef, Dr. Valentino! But that's not all! Check out all of the items here, and bid on your favorite today!

RSVP for free today! We can't wait to celebrate with you!

MEET THE NEXT

Leaders

GENERATION OF

Dejah Smith

A graduate of East Carolina University, Dejah is currently a grad student studying Biomedical Sciences at UNC Charlotte and plans to pursue medical school. While interning, she worked with the Research Department as a project manager for videos about the Community Voices in Research platform and Virtual Advisory Panels. She also updated and created templates and deliverables that fuel efficient drafting of research protocols and documents.

Garrett Hayes Garrett is a graduate of the University of Texas at Austin, a Master of Public Health candidate, and current medical school applicant. As an intern with the Advancement Department, Garrett communicates with donors, uses donor prospecting tools, and helps create promotional content for NHF. Garrett has participated in five marathons and uses distance running as a tool to prove that people with severe hemophilia can lead active lives.

Maddie Smith As a Public Policy intern, Maddie is working on creating a toolkit and framework on how chapters can successfully plan, design, & execute state advocacy days. Currently a Political Science student at Oregon State University, and a person with VWD, Maddie has volunteered with the IBD community for most of her life. She is an NYLI member; has been a counselor at Oregon's camp for kids with IBDs; coordinated the PEAK Teen Program for teens with IBDs; and enjoys competitive Irish dancing.

Patti Williford Patti graduated from George Mason University in 2020 with a degree in Community Health & concentration in Clinical Science. An Education intern, Patti is developing education materials on gene therapy, future therapies, and clinical trials, as well as preparing content and presentations for the Education for Empowerment Series. She's served as the Program Coordinator for the Hemophilia Association of the Capital Area and plans to work in public health and healthcare.

THE INTERNS OF NHF Through the National Youth Leadership Institute (NYLI), people aged 18 to 24 in the inheritable blood disorders community refine their leadership skills. The program is designed to encourage personal growth, effect change, and positively influence others.

This year, the NHF office invited five NYLI members to lend their expertise and expand their knowledge as department interns.

"It's great to work with current NYLI and NYLI alumni in their capacity as interns," says Director of Development James Uyeda. "It's tremendous to witness them apply their NYLI experiences in a real-world setting. Their ability to adapt and be proactive in a reactive world-especially this quasi-virtual world--is testament to their skill set and the impact NYLI makes. I have great hope for the future of the IBD community, knowing what outstanding leaders are emerging."

Take time to get to know some of this year's interns by reading their bios! *not pictured: Laila Jafri

Community Spotlight: BioMarin

Community Spotlight: BioMarin

NHF partner BioMarin approaches supporting the bleeding disorders community with innovation— and creativity.

Established in 1997, BioMarin is a world leader in developing and commercializing first- or best-inclass therapies for rare genetic diseases.

BioMarin draws inspiration from the strength of the community. From clinical research and development to supporting local advocacy groups, BioMarin focuses on centering the voices of those they serve.

“You may not realize how important each one of you are to us, the healthcare providers on the other side. You inspire us, you lift us up, and you help us become better individuals, but more importantly, you challenge us with some healthy skepticism.” – Wing Yen Wong, Group VP of Global Medical Affairs at BioMarin.

BioMarin recognizes the therapeutic power in the arts and self-expression. In fact, it’s one of the main ways they foster lasting community connections. Accordingly, they collaborated with Believe Limited to launch the Breaking Through!

Musical Theater Intensive Program, and in 2018, they launched a workshop and musical performance of “Hemophilia: The Musical.” The six-song production featured young people affected by bleeding disorders from across the US and premiered in NYC—and then 10 other cities in 2019 before pivoting to a virtual platform in response to the pandemic. More than 5,000 community members have participated in the program to date and of those who have provided feedback, 100% have reported that they’ve felt more empowered in managing their bleeding disorder and that they’ve felt more connected to their peers as a result.

“The Breaking Through! Musical Theater Intensive is a groundbreaking effort to empower young people in the bleeding disorder community who want to better understand how the arts and artistic expression can improve their health outcomes, and really, their lives in general.“ —Patrick James Lynch, Co-Founder and CEO, Believe Limited

However, that’s not the only way they engage the voices of the community members! continued on next page....

Earlier this year, BioMarin and Believe Limited also unveiled a first-of-itskind graphic novel, Blood of the Paladin, featuring the real-life experience of community member Jonathan Hill, who lives with hemophilia A and survived the blood contamination crisis of the 1980s.

In the graphic novel, he experienced very real burdens of hemophilia A, such as chronic pain, opioid addiction, breakthrough bleeds, joint damage, not to mention the resulting impact on the family and a career.

The powerful story showcases the important role his family, friends, and doctors played in helping him become his own best medical advocate and champion. Through the graphic novel, he takes us alongside his journey of managing his condition and identity, interestingly, through his love of Dungeons & Dragons (D&D). BioMarin’s hope is that Blood of the Paladin helps to bring greater understanding not only of the burdens, but also the remarkable resiliency, of people with hemophilia.

“I hope my tale can in a small way help preserve and illuminate the history of what the bleeding disorder community faced in the 1980s and 1990s, and how we came together as a community to overcome and learn from it. It was a long road, but with some perseverance and focus, as my dad would say, ‘Just focus on placing one foot in front of the other and you’ll reach the summit eventually.’” – Jonathan Hill, community member and author of Blood of the Paladin.

NHF is proud to work alongside BioMarin and to share in the important work they do for the community.

A Gift for the F u t u r e

Did you know that you can help us make sure that we can continue to improve the lives of those with inheritable blood disorders--while saving on taxes?

Do you have any appreciated assets? If so, you can make a non-cash gift to NHF to reduce your future tax burden while increasing your impact on the community. In just a few minutes, FreeWill, a free, online tool, can help you learn more and make your gift directly to NHF to advance research, education, and advocacy for generations.

Give stock today!

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

Education for e m p o w e r m e n t

Spend your Tuesday evenings with our Education for Empowerment team. Over the course of the next four weeks, we'll be presenting three of our new educational series, covering a variety of topics. Each series will contain four workshops, presented to you by our very best speakers. Grab some snacks, get comfortable, and join us virtually on Tuesdays at 7pm ET.

10/12

T h e

B a s i c s

o f

learn more & register!

I n n o v a t i v e

W h a t

y o u

T h e r a p i e s :

n e e d

t o

k n o w

A basic overview of current & future treatment options for hemophilia that makes complex concepts more understadable.

10/19

10/26

N a v i g a t i n g

c l i n i c a l

t r i a l s

Topics covered include an overview of the phases of the clinical trials process, informed consent, & consumer responsibilities for participation in trials.

C o m m u n i c a t i n g

w i t h

p r o v i d e r s

Learn skills to improve your communication & advocacy to speak more effectively & secure appropriate treatment.