August 2021
Donor Digest In this Issue:
A Vision for the Future Become a Marathon Runner! It's Make-a-Will Month Run, White, + Blue Recap A P2P Fundraiser Shares Her Story RSVP!
A Vision for the Future The future of inheritable bleeding disorders research takes root this September at the State of the Science Research Summit. From 9/12 to 9/15, NHF will join the community for a virtual conference unlike any other, and together, we’ll identify and accelerate research for affected individuals and their families. “Based on extensive input from the community about the most urgent and pressing needs, we are taking the lead to align the community on specific priorities that can dramatically improve care for the future,” said NHF CEO and President Dr. Leonard Valentino. “We’ve made tremendous progress as a community in recent years, but we are acutely aware of the health disparities and gaps in access that persist in the treatment of inheritable bleeding disorders, particularly among women and those with ultra-rare bleeding disorders.” Beginning in 2020, patients, caregivers, researchers, healthcare professionals, chapters, and industry partners participated in regular focus groups, which included listening sessions and surveys. What these community members shared allowed NHF to shape working groups that met regularly for nearly half a year. (continued below)
"Our goal is to establish a clear understanding of the most pressing issues challenging our community today and the areas of greatest opportunity for research,” said Michael Recht, MD, PhD, American Thrombosis and Hemostasis Network chief science officer, and State of the Science co-chair. We invite you to join us for this free, groundbreaking event for interactive panel discussions and opportunities for dialogue. To learn more and to register, please visit the event page here.
Dr. Michael Recht ATHN
Dr. Len Valentino NHF
We are taking the lead to align the community on specific priorities.
Is running the New York City Marathon on your bucket list? We have a spot for you! NHF is proud to be an official charity partner of the 50th anniversary of the TCS New York City Marathon. Taking place on Sunday, November 7, 2021, the 26.2-mile New York City Marathon is o n e o f t h e p r e m i e r r u n n i n g e v e n t s i n t h e w o r ld, looping runners through all five boroughs of NYC. Whether you’re a seasoned runner or just getting started, we want you to join the NHF Team to h e l p u s i n c r e a s e a w a r e n e s s o f in h e r i t a b le b lo o d disorders—and raise funds critical to supporting NHF’s mission. R u n n e r s a r e g u a r a n t e e d e n t r y in t o t h e 2 0 2 1 T C S New York City Marathon in exchange for a commitment to raise a minimum of $3,500 for the inheritable blood disorders community and N H F. N e w t o f u n d r a i s i n g ? D o n ’ t s w e a t i t ! N H F offers one-on-one guidance to make sure you reach your goal.
TEAM MEMBERS RECEIVE: Race entry into the 2021 TCS NYC Marathon. NHF will cover race entry fees for runners requesting a guaranteed race entry. Personalized 12- or 16-week online training plan based on your fitness level/running experience. NHF GO swag bag filled with goodies like a custom Dri-Fit shirt, custom sneakers, + running accessories to get you ready to run! Team brunch for you and a guest on 11/6.
READY TO BE A CHAMPION FOR THE INHERITABLE BL OOD DISORDERS COMMUNITY? APPLY FOR YOUR SPOT TODAY!
AUGUST IS NATIONAL MAKE-A-WILL MONTH Most American adults don’t have a will and may not know that they need one — or that writing one is an easy and essential way to take care of those you love. So, in honor of this important month, NHF is pleased to share our free online will-writing tool, FreeWill. Not only does a gift in your will cost nothing up front, but it’s also a powerful way to show your dedication to research, advocacy, and treatment for inheritable blood disorders. When you include NHF in your will, you ensure that NHF can drive progress forward in our community for generations to come.
START MY LEGACY TODAY Have you already included NHF in your estate plans? Do you have questions about supporting the inheritable blood disorders community with a legacy gift? Please reach out to us here.
A 2021 Recap Between June 4th and July 4th, 37 individuals laced up their sneakers to walk, run, or bike in our second annual Run, White, and Blue event. And these participants didn’t make just their miles count by raising awareness of inheritable blood disorders—they also raised nearly $10,000 to fuel the NHF mission. Run, White, and Blue is part of our new endurance program: NHF GO. The month long event rallies fitness enthusiasts to work get active in support of the inheritable blood disorders community. Participants from across the country choose to get moving in a 5K, Family Fun Walk, or cycling event, joining us at any pace...from any place! NHF thanks all of the amazing Run, White, and Blue participants, donors, and supporters for making this event a huge success. You keep NHF running!
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. We'd love to partner with local races and events around the country to raise awareness of inheritable blood disorders. To submit an idea for a future or event or to nominate NHF as a partner charity in a local event near you, email Maureen Parsons at nhfgo@hemophilia.org.
Peer (-to-peer) Review
Rebecca Albert
Rebecca Albert was looking for a way to give back to the rare bleeding disorders community for her birthday and to honor the life of her father. So, she launched a fundraiser to support NHF and enlisted her family and friends to reach her goal. In just two short weeks, she raised more than $1,000! "I chose to create a fundraiser in memory of my father, James Albert, who was diagnosed with acquired hemophilia, a rare bleeding disorder with few clinical studies," said Rebecca. "Having a social media platform allowed me to raise awareness of this life-threatening disorder and request donations for further research that is so desperately needed to find better treatments and, possibly, a cure."
Want to make your next birthday or celebration a little sweeter? Become a champion for our community, and start a fundraiser today. It’s easy to get started. Visit uniteyourway.org to learn more!
Save the Date Date NHF’s Annual Bleeding Disorders Conference (BDC) is our signature event and highlights our strong commitment to education. Leading community members and experts on hemophilia and other bleeding disorders come together every year to present the most recent advances, exchange the latest science and discuss the newest clinical applications designed to improve patient care. Through an extensive lineup of educational sessions for patients, medical providers, chapters, poster and oral communications, stateof-the-art lectures, exhibits, and professional networking opportunities, BDC promotes important advancement for the community. Register here!