August/September 2021
In this Issue:
Have Patients: Community Members Steer the Research Agenda
Have Patients:
Community Members Steer the Research Agenda
Marble Slab + NHF:
Save the Date:
NHF just wrapped up its first-ever State of the Science Research Summit this week. Six research priorities relevant to the bleeding disorders community comrpise the Summit, each with its own group of scientific experts and subject matter experts (SMEs)--or, mor e specifically, patients. Priorities include: 1. Hemophilia A and B 2. Von Willebrand disease, platelet dysfucntion, & other mucocutaneous inherited bleeding disorders (IBDs) 3. Ultra-rare IBDs 4. Health of women, girls, & persons with the potential to menstruate 5. Diversity, equity, & inclusion; heatlh services research; & implementation science 6. Facilitating priority research in the IBD community
Red Tie Soiree
Below, meet some of the SMEs!
Sparing Change to Make a Change Community Spotlight: Hemophilia Alliance
Mark Skinner As a patient born before the advent of modern therapies and a former leader within NHF and WFH, Mark has an acute understanding of issues in the hemophilia A and B space and how they have changed . “We need treatments that are fully responsive to what matters to patients. Outcomes that encompass the whole cycle of life--the ability to go to school, get an education, have a career and family, as well as participate in the activities of daily living and sport, unimpeded by our hemophilia.” Mark believes that patient empowerment and equity should be pursued with both clinical measures and quality of life in mind.
Shatara Askew Diagnosed with factor 7 deficiency at a young age, SME Shatara wants to share her experiences as a rare bleeding disorder patient and a mother of three. “I was super afraid to talk about it, and now I’m opening up… I’m just glad I had this opportunity to share with you guys that you’re not alone in this fight… with this bleeding disorder. We are here to come together to lift each other up.”
Nikole Scappe A patient herself with four siblings and a mother with VWD, Nikole is glad that the bleeding disorders space has started to give VWD the attention it deserves. However, she understands that there is still a long way to go. “I wasn’t diagnosed until I was 13… We have come so far in treatment advances, yet so many still struggle to receive a diagnosis or quality care.” Nikole understands the most pressing challenges VWD patients face, and she is excited to be part of the solution in “making a blueprint for future research.”
Shellye Horowitz Undiagnosed with hemophilia A until she was 45, Shellye knows the impacts of the clinical bias against women with hemophilia. “As a woman, bleeding issues are likely to be questioned and minimized. Research was key to understanding my bleeding and receiving care.” Without research, Shellye would not have been able to self-advocate to her providers and receive the treatment that has reduced her bleeding. Understanding how research has changed her life, Shellye hopes that “unifying our community with a research focus will assist patients and providers in improving diagnosis and care for all people with bleeding disorders.”
Ziva Mann Ziva , a mild hemophilia patient, mother of a son with severe hemophilia A, and NHF board member, believes in the power of diverse approaches in research. She explains that research and its value go beyond typical lab work. “Research can be done by a few brilliant people in a lab, or it could be done by a network of people... working and thinking together, sharing what they learned. Research can discover new treatments. It can also learn about what people and families like mine need in order to thrive, to live a life where your bleeding disorder is just a detail… Medicine is just one piece of that puzzle.”
Stay tuned
for updates on the research agenda!
#NHFSOS
A Sprinkling of
G e n e r o s i t y
NHF board member Ryan Griffith knows that life is sweet. Twenty years ago, he opened his first Marble Slab Creamery franchise in the Charlotte, NC, area. Some time later, his son Kai was born. When doctors diagnosed Kai with severe hemophilia A with an inhibitor, Ryan decided that he could use his position as a business owner to benefit the inheritable blood disorders community. Since 2019, Ryan has used his Marble Slab locations to raise money to support NHF's mission. With Kai in tow, Ryan took time to educate his Marble Slab teams about hemophilia so that they could comfortably ask customers to donate a dollar or round up their purchases for NHF. In that first year, Ryan raised $7,500. Earlier this summer, before the delta variant was widespread in the U.S., CEO Len Valentino put his culinary skills to use serving up scoops of ice cream to customers while raising awareness of inheritable blood disorders. To date, generous Marble Slab customers have contributed more than $50,000 to our community just by rounding up their totals. Cents makes sense!
Photos by Carrie Allen
A treat twice as sweet. Since 2019, Marble Slab visitors have rounded up their purchases to a cool $50,000 to support the inheritable blood disorders community!
Help Us
Recently, a number of our friends in the inheritable blood disorders community have asked how they can be a lasting part of our commitment to finding better treatment and cures. Many donors have found that, as the world changes, non-cash gifts are a great opportunity impact generationsfor for years to come without affectingto yourthis cash flow Wetoare grateful your commitment now.
community and stronger because of it.
One way to do this is through a planned gift, such as naming NHF as the beneficiary of your will or trust. You can do this easily by adding simple language (found at the link below) to your plans. If you haven’t yet created a will, Free Will can help you get started. By making plans to support NHF now, you help us fulfill our promise to offer research, education, and advocacy opportunities to those we serve. With you, we can continue to find treatments and cures that will change lives forever.
LET'S MAKE PLANS To explore your options or share your intentions, visit plannedgiving.hemophilia.org/give or email plannedgiving@hemophilia.org.
Th
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YOUNG HOPE SOCIETY
Inspiring the next generation of community activists.
Are you a young professional looking to build your network while making an impact on your community? Join YHS, a group for individuals aged 2140 that encourages networking, relationship building, and advancing the interests of the inheritable blood disorders community. YHS members support NHF and the chapter network through volunteering, fundraising, and building awareness. As a member, you'll make a difference both locally AND nationally! And there are so many ways to participate!
Sit on the YHS National Advisory Board to grow your leadership skills + connect with others across the country. Attend bimonthly events to network with peers, learn new skills through professional development workshops, or participate in the YHS Speaker Series where you'll hear from leaders in their fields. Support the community by partnering with NHF and local chapters as a volunteer.
and more!
Sign up today and get an NHF hat! Membership is free! Questions? Contact Maureen Parsons, Sr. Manager of Development, at mparsons@hemophilia.org.
Its advocacy team regularly supports efforts NHF undertakes, like the Hemophilia SNF Access Act that will go into effect this year. A supporter of patient choice, the Alliance also works with employers, payers, and HTCs so that patients who want to use their HTC pharmacy can.
Community Spotlight: Hemophilia Alliance NHF's years-long partnership with the Hemophilia Alliance is crucial to serving the inheritable blood disorders community. The Alliance makes sure member hemophilia treatment centers (HTCs) have the expertise, resources, and public support needed to sustain their integrated clinical and pharmacy services. A big part of the Alliance's work is providing all 107 members HTCs with access to therapies at the lowest possible price and terms. And the results are impressive: Since the Alliance's founding in 2005, member HTCs have saved, on average, $70 million per year (or $700,000 per center). That's in addition to discounts they receive as 340B Drug Discount Program participants. What's more is that the Alliance reinvests $3 million into organizations like NHF and the Hemophilia Federation of America annually.
I can't overstate how important the Alliance is to our community. The Alliance works hard to protect patient access to care, at the right time, in the right place, with the right provider. They've been a tremendous partner to us over the years. Michelle Rice, Chief External Afffairs Officer, NHF
In fact, a perfect example of their commitment is their leadership and investment in bringing a DDAVP intranasal product to market that began shipping this week. As new therapies and technologies emerged, the Alliance pledges to remain steadfast in assuring access to the gold standard of clinical care offered at HTCs. NHF is proud to work alongside our valued partners at the Hemophilia Alliance.
REUNITED
A renewed focus on research, as we come together and unite to celebrate the inheritable blood disorders community. Presented by:
SAVE THE DATE
OCTOBER 16, 2021 Pre-Show 7pm EST | Virtual Main Event 7:15pm EST
Full of ups and downs, 2021 reminds us that, when we work together, we can accomplish great things. On 10/16, your enthusiasm and support will help NHF drive forward innovative research plans for our community.
Join us for an interactive, live-streamed event featuring:
special guests | silent auction | musical perfomances Learn more and RSVP today!