December 2021
IN THIS ISSUE Happy Holidays From Dr. Valentino Research Questions A Conversation with Our CSO NHF Gets Moving A Marathon Recap A Successful Shoesday Thanks to You A Fellowship for the Future Judith Graham Pool What Are Your Plans? Planned Giving 2022 Washington Days Register Today!
As the days run out in 2021, I'm reflecting on your support. Your contributions safeguard the health of the inheritable blood and bleeding disorders community by supporting vital programs and research. They pave the way, too, as we form a research agenda that centers the experiences of those most affected. Your partnership is key to ensuring progress in the new year, just as it has in the past. Thank you for your commitment to NHF's mission. I wish you health and happiness as we move into 2022. Leonard A. Valentino, MD President and CEO
2021 @ NHF
RESEARCH
Kevin Mills, NHF's Chief Science Officer, discusses his background, what led him to NHF, and his goal to achieve a world without inheritable blood disorders.
questions
TELL US ABOUT YOUR BACKGROUND. My background is in cell and molecular biology. I got my BA in biology from the University of Colorado and my PhD in biology from MIT. My academic research was in developmental hematology. I also co-founded a biotechnology company developing novel therapeutics for blood and other cancers.
WHAT DREW YOU TO NHF? The passionate team and the opportunity to make a difference for people with inheritable bleeding disorders through research.
IN A NUTSHELL, WHAT ARE THE OUTCOMES STATE OF THE SCIENCE RESEARCH SUMMIT?
OF
THE
The Summit was a broad community effort to identify critical research priorities with the goal of enabling people with bleeding disorders and their families and communities to thrive. The critical themes that emerged were putting people at the center of research, the need for multidisciplinary collaboration, and the importance of equity and inclusion in research and health care.
HOW WILL RESEARCH?
NHF
USE
THE
OUTCOMES
TO
DRIVE
NHF will work with the community to develop a national blueprint that will guide the research enterprise and marshal the resources to make significant new advances.
WHAT ARE THE NEXT STEPS? Engaging the community to turn the priorities into action. The community is essential to lending individual voices to the process, communicating their needs and concerns, and acting as champions for research among their peers.
HOW DO NHF DONORS AFFECT RESEARCH? Their impact is huge. Every single donation advances science. Without individual donors, we wouldn't have had breakthroughs like recombinant factor products or gene therapy--and without individual donors, we won't have breakthroughs in the future that lead us to cures.
ANYTHING ELSE YOU'D LIKE TO ADD? It is a privilege and a joy to work with the fantastic people at NHF and to be a part of this wonderful community.
NHF GETS
Moving
In November, seven athletes laced up their sneakers and accomplished an incredible feat: running in the TCS New York City Marathon on behalf of NHF! The team came from across the US--from as far as Oregon and as close as NYC--to raise awareness and funds for the inheritable blood and bleeding disorders community. Together, they raised $28,000 to connect families to tailored resources designed to empower. I want to give a huge shoutout to our marathon runners," said NHF Chief Operating Officer Dawn Rotellini. "Thank you so much for, literally, your blood, sweat, and tears, as well as the fundraising that is so critical to support our programs and services."
MARCH 20, 2022
NHF has spots available in the 2022 United Airlines New York City Half Marathon!
Want to run? Email Maureen Parsons, Sr. Manager of Development, at mparsons@hemophilia.org to learn more about this and other endurance events in your community!
These Shoes Were Made for Giving
...and it's all thanks to you!
Your collective generosity on Giving Shoesday helped us raise $20,000 to support individuals and families affected by inheritable blood and bleeding disorders! This holiday season, we're grateful that you choose to walk alongside NHF and our friends in the community as, together, we move towards a world without blood disorders.
Are you
a young professional with philanthropic ambitions?
Join our Young Hope Society! The Details
The Perks
YHS is a group for professionals between ages 21 and 40 who want to support the inheritable blood and bleeding disorders community
Professional development workshops Speaker Series featuring dynamic leaders from various fields Coaching for volunteering, fund-
alongside their peers.
raising, + advocating It's free to join, and all are welcome!
Networking opportunities
Make an impact on the community and your resume!
Sign up today!
A FELLOWSHIP FOR
the future
Established by NHF in 1972, the Judith Graham Pool (JGP) Postdoctoral Research Fellowships have provided decades of support for basic science and pre-clinical research in bleeding disorders. The premier fellowship was named in honor of Dr. Judith Graham Pool, who in 1965 discovered a method of extracting clotting factor from human plasma to formulate cryoprecipiate. Her breakthrough opened the door to a series of research developments that revolutionized treatment for hemophilia, ultimately leading to its management through recombinant replacement factor and current extended half-life therapies. Since the program's inception, NHF has funded many scientists whose projects have produced vital insights into hemophilia and other bleeding disorders. JGP projects have resulted in the development of safe concentrates, enhanced methods of testing and screening, and a framework for advances in gene therapy. Major support for the JGP Fellowship comes directly from NHF's network of chapters. "Chapter support directly impacts people living with inheritable blood disorders by accelerating cuttingedge science that is revolutionizing treatment and care," said Kevin Mills, NHF Chief Scientific Officer. "We are truly grateful for the partnership and commitment to advancing research and the careers of promising researchers. Today's support is making tomorrow's medicines a reality right now." NHF thanks each chapter whose support of JGP is changing lives.
Today's support is making tomorrow's medicines a reality right now. Kevin Mills, NHF
What are your
Plans?
As we approach the end of the year, we have much to do. Planning for the future might get put on the back burner, but now is the perfect time to think about the years ahead and the impact you can make. See why planning should be part of your year-end to-do-list and discover helpful resources to guide you. If you're a DIY type of person, you can create your own will or donate stock with free resources from NHF.
WE'RE HERE TO HELP Questions about including a gift to support NHF in your future plans? Contact James Uyeda at 646.734.7560 or juyeda@hemophilia.org.
Washington Days is an opportunity for the community to advocate for important issues. In 2021, more than 400 volunteer advocates from 45 states met with legislators and staff to discuss federal funding for bleeding disorders programs and encourage support of policies that increase affordability of coverage and access to care.
Learn More + Register!