July 2022
Donor Digest In this Issue:
NHF Health Equity Summit NHF GO Run, White and Blue Update Young Hope Society Career Panel Bleeding Disorders Conference NHF Communications Upcoming Events 50th Anniversary of JGP Research Fellowships
NHF is leading the Charge Hello friends and happy summer. I hope everyone is staying healthy and safe!
I want to share with you that NHF has launched an exciting and new biennial event: the Health Equity (HE) Summit “Every Hour, Every Day: Ensuring health equity in the inheritable blood disorders community.” The HE Summit took place on June 1 & 2 in Atlanta, GA. NHF is dedicated to finding cures for inheritable blood disorders and addressing and preventing the complications of these disorders through research, education, and advocacy to enable people and families to thrive. To fulfill this mission, NHF recognizes health equity is an integral component to meeting the mission. The HE Summit solicited input from members of the inheritable blood disorders community as well as from other important stakeholders such as providers, other organizations in the blood disorder and rare disease community, and health equity champions. Our ultimate goal is to strive for equitable access and quality care for those with inheritable blood disorders. The HE Summit is a part of the first steps in achieving this goal.
The summit brought together stakeholders to discuss themes around access to care, mental health, navigating health systems, payers/policy for a better understanding of lived experiences, data outcomes and existing disparities that are within the realm of our influence. We identified where each stakeholder’s group can intervene and work towards permanent changes resulting in health equity for all. Four objectives were identified to help drive our work over the next 12-18 months: 1. Transform organizational culture and align daily work to achieve health equity. 2. Address emerging IBD community health needs, including issues with access to care, by supporting adaptable, innovative, outcome-focused, sustainable programs and services. 3. Improve access to services and quality care by supporting integration and coordination of health services, health care providers, payers, and the public health sector. 4. Expand stakeholder partnerships that lead to sustainable initiatives that eliminate health disparities. To achieve these objectives, a task force was established, and we will hold focus groups to prioritize the needs of our community through the lens of health equity. We also expect to create a white paper, an NHF health equity model, and an empowerment and equity action model that will inform our work for the next 3-5 years. NHF is thrilled to be leading the inheritable blood disorders community in this effort. We would love to hear from you about your experiences with health equity. My inbox is open, please reach out to knorris@hemophilia.org or mmelton@hemophilia.org.
As NHF continues to serve more individuals in the inheritable blood disorders community, we want to ensure our name, mission and vision is inclusive and aligns with those we serve. We are excited to begin the process of and organizational rebrand and we want to make sure you are included. If you would like to participate in a focus group or a 1-on-1 call to share your thoughts about a rebrand please email Amanda Hagen at ahagen@merzbranding.com.
Meet NHF’s 2022 TCS New York City Marathon Runners! Pam Meakim has been a runner for 14 years and has 5 marathons under her belt, but this is her first time participating in the TCS NYC Marathon! While she has no connection to the blood disorders community, she is “looking forward to running for something bigger than myself and using my platform to raise funds for and donate to this worthwhile cause!” When his 4-year-old son was diagnosed with severe hemophilia A, Chris Akrimi quickly got involved in the hemophilia community. He fought hard for a new treatment for his son, who thus became one of the first children in the UK to receive Hemlibra. Chris has raised over $10,000 for the community while participating in the London Marathon and he’s looking forward to bringing his fundraising efforts to the U.S.! Sarah Stacks wasn’t familiar with inheritable blood disorder until a close family friend was diagnosed with an inheritable blood disorder as a child. Ever since then, and thanks to her mother who is a pediatric nurse, she has understood the gravity of an inheritable blood disorder diagnosis and she can’t wait to help represent the community in the marathon. “I am excited to run for a charity because I want to make an impact. Specifically, I love the mission and impact that NHF is making, and I want to be a part of it.” Running is a massive passion for Christina Pellerito. She started running 15 years ago and her life has changed for the better ever since. This is her first time running for a charity in the TCS NYC Marathon and she can’t wait. “There are many who live with these conditions on a day-to-day basis, and they deserve visibility and support. I want to contribute to this mission by raising donations and running for all who are impacted by an inheritable blood disorder."
Hannah Hoehnen has dreamt of running the NYC Marathon ever since she cheered on her sister, Nicole, and family friend, Michelle, as they ran the marathon in 2019 for NHF. “Watching them fundraise for NHF and help bring awareness for Hemophilia, I became motivated to do the same! Can't think of a better way to step into the marathon ring than by also giving back to a foundation that hits close to home.” We are also looking forward to welcoming back our 2020 runners: Michelle Fleming, Jessica Kopp, Dino Paulesc, Robert Dumitru, and Raz Dumitru! Interested in running the TCS NYC Marathon with NHF? We have a couple spots left. Email Riley Breen at rbreen@hemophilia.org for more information.
Honoring Dr. Charles Drew June 3 is the birthday of Dr. Charles Drew, a physician and researcher most known for his pioneering work in blood preservation. Honor his legacy by watching a new video from NHF. WATCH NOW
SAVE THE DATE The Red Tie Soiree is being held Saturday, October 15th at the Julia Morgan Ballroom in San Francisco and it is the National Hemophilia Foundation's (NHF) signature fundraising gala. During an evening of camaraderie, support, and celebration, the Soiree celebrates the amazing, unparalleled work done together by NHF, its stakeholders, and the inheritable blood disorders community at large-- while raising critical funds for mission priorities. Funds raised through the Soiree by our generous donors enable NHF to make important contributions towards cutting-edge research in the treatment of inheritable bleeding disorders. The Soiree also supports NHF's work to provide vital resources and education to individuals affected by bleeding disorders, support advocacy efforts on behalf of the bleeding disorders community and provide support to NHF's nationwide network of chapters. For more information or to buy your tickets today, visit hemophilia.org/soiree,
Beginning on June 4th, members of the community laced up their sneakers to walk, run, or bike in our 3rd Annual Run, White & Blue event. These participants have added meaning to their miles by raising awareness and funds for the inheritable blood and bleeding disorders community. Run, White & Blue is a part of our endurance program, NHF GO. The event runs from June 4th to July 4th and participants from across the country sign up for a 5K, Family Fun Walk, or Cycling event, joining us at any pace from any place. There’s still time to sign up and get moving! Thank you to everyone who has registered and donated so far!
Young Hope Society The Young Hope Society (YHS) consists of a diverse group of young professionals between the ages of 21 and 40 aiming to make an impact through volunteer opportunities, philanthropic initiatives, and networking opportunities. YHS members have the unique opportunity to support the community alongside their peers while growing their personal network and strengthening leadership skills. This month, NHF hosted a career panel for YHS members. Dynamic leaders from a variety of career backgrounds shared advice and wisdom with our members. Thank you to the Hemophilia Alliance and Takeda for supporting the event. Panelists included: ·Donald Smith, aerospace engineer with NASA ·Alison Clifford, Director Therapeutic Policy and Advocacy with Takeda ·Jennifer Borrillo, MSW, LCSW, MBA, Executive Director of the Louisiana Center for Bleeding & Clotting Disorders ·Heidi Lane, PT, DPT, PCs, Adult & Pediatric Physical Therapist with Utah Center for Bleeding & Clotting Disorders Interested in joining us for our next event? It is free to join. Sign up today.
Bleeding Disorders Conference 2022
NHF is thrilled to announce that the 74th Annual Bleeding Disorders We are grateful for your commitment to this Conference (BDC) will take place from August 25 to 27, 2022, in Houston, community andvirtually, stronger of community it. Texas. After two years connecting you’ll because be able to join members in learning about the latest and research developments in hemophilia, von Willebrand disease, and other inheritable blood and bleeding disorders. BDC is the largest and most impactful meeting in the U.S. IBD community. Meeting attendees access high-caliber educational programming, make connections, and most importantly, realize that they’re not alone. Your past gifts to NHF have helped open doors that have historically been closed to those with inheritable blood disorders, ensuring more people have access to the conference and community. BDC is a chance to bring our community together. And remember -- you can attend BDC this August online or in Houston. Register at hemophilia.org/bdc.
Judith Graham Pool 50th Anniversary Judith Graham Pool (JGP) Postdoctoral Research Fellowship is celebrating its 50th anniversary in 2022. In this program NHF has funded numerous scientists whose projects have produced vital insights into hemophilia and We disorders. are grateful for your commitment to this other bleeding
community and stronger because of it.
Established by NHF in 1972, the Judith Graham Pool (JGP) Postdoctoral Research Fellowships have provided a long legacy of support for basic science and pre-clinical research in bleeding disorders. In 1965, Dr. Pool discovered a method of extracting clotting factor from human plasma to formulate cryoprecipitate. This breakthrough opened the door to a series of research developments that would revolutionize treatment for hemophilia and ultimately lead to its management through recombinant replacement factor and current extended half-life therapies. Since the program's inception, NHF has funded numerous scientists whose projects have produced vital insights into hemophilia and other bleeding disorders. JGP research fellowship award projects have contributed to the development of safer concentrates, enhanced methods of testing and screening, and have laid the groundwork for current advances in gene therapy for hemophilia. NHF looks forward to celebrating this important milestone throughout the rest of 2022!