Donor Digest
In this Issue:
Bleeding Disorders Conference
NHF GO
Hemophilia Alliance Education Update
Sanofi Update
Meet NHF's 2023 NYC TCS Marathon Runners
Upcoming Events
BDC is almost here!
NHF is thrilled to announce that the 75th Annual Bleeding Disorders Conference (BDC) will take place from August 17 to 19, 2023, in National Harbor, Maryland (DC Area), at the beautiful Gaylord National Resort & Convention Center! Join our community 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 National Harbor.
Register at hemophilia.org/bdc.
July 2023
NHF is excited to announce the return of the No Limitations Field Day event this summer. The purpose of the event is to promote a safe, active lifestyle for people living with inheritable blood disorders while also educating the larger community about what it means to live with an inheritable blood disorder. We want people to know that our community members can still play and live just like anyone else.
Individuals and families can participate from across the country and host their event anytime between now and July 15th. There are registration options for all ages – including adults! After signing up, attendees will receive a customized field day box full of games and activities to play with your friends and family.
Visit hemophilia.org/fieldday to sign up and receive your custom field day box. We hope you’ll join us!
We are grateful for your commitment to this community and stronger because of it.
The 25th Anniversary Linda Gammage Social Worker Conference
Forty social workers from around the country convened in beautiful San Mateo, California for the 25th Anniversary of the Linda Gammage Social Work Conference. To commemorate the “silver” anniversary of this meeting, this year’s conference honored the history of the bleeding disorder community in a couple of ways.
First, the tragic history of HIV and AIDS in the bleeding disorders community was discussed in detail, and social workers learned how those events continue to affect our patients and families today. Attendees also celebrated social worker Linda Gammage and the founding members of the conference; 25 years ago, they had the foresight to approach CSL Behring (then Aventis Behring ) for support with a meeting specifically for social workers practicing in the bleeding disorders community.
The educational component focused specifically on individual, intergenerational, and community trauma. Morty Diamond, LMSW, from San Francisco State University drew on his experience as a therapist and social worker to bring a vibrant, informative, and skill-laden conversation about trauma informed work with clients. He also covered self-care practices, and effective interventions that relate to the complex trauma experienced within the bleeding disorders community.
After Morty’s presentation, the movie “Bad Blood: A Cautionary Tale”, which describes the HIV/AIDS pandemic in the bleeding disorder community, helped provide context for panel discussions that were held the following day. The panelists were powerful and informative. An entire family system, affected by HIV/AIDS, candidly shared the HIV/AIDS crisis influenced the course of their lives, and the lasting impact to this day. Afterward, Dr. Julie Hambleton and Susan Karp, RN discussed the HIV crisis and what it was like working in the HTC at the time, and social workers Dana Francis, Laura McGinity, and Dave Rushlow discussed social work practice and psychosocial challenges during the HIV/AIDS crisis.
Social workers then visited the National AIDS Memorial in San Francisco and had time to reflect quietly at the Hemophilia Circle. A boulder was placed there in honor of Linda Gammage, as well as bricks thanking the Founding Members of this conference. The evening event was held to celebrate Linda Gammage and the founding members’ contributions, and sponsors of this conference.
Because of Linda’s initial idea and tenacity to see it through, and the generous support from CSL and the Hemophilia Alliance, approximately 1000 social workers have attended this conference over the last 25 years. This year, 40 Social Workers attended in-person (16 attended virtually) and returned to their centers with trauma-informed practice techniques and a deeper understanding of the trauma within the bleeding disorders community; a history that should never be forgotten. This program has significantly improved the ability of social workers across the country to meet the needs of the patients in the bleeding disorders community.
The Planning Committee and Social Work Attendees would like to extend a special thank you to CSL Behring who has supported the Linda Gammage Social Work Conference since its inception in 1997. And thank you to the Hemophilia Alliance for years of support, and for making the 25th Anniversary of the Linda Gammage Social Work Conference a special event for all.
Article written by Colleen Joiner (Linda Gammage Planning Committee Chair) and Amy Wilson (Linda Gammage Planning Committee ViceChair)
We are grateful for your commitment to this community and stronger because of it.
NHFPartnerSpotlight: Askingthetoughquestions tosupporttherareblooddisorderscommunity
What if we could ….
Help improve access to hemophilia treatments around the world? Work together to address health equity challenges?
Change the treatment paradigm for people living with rare blood disorders?
Every day, Sanofi employees ask what if…? And we work together on solutions that can improve people’s lives by chasing the miracles of science and making the impossible possible. Sanofi has been involved in the rare disease space for more than 35 years and our commitment to give our all to support the community has never wavered.
PATIENTS
AND SCIENCE ARE AT THE CENTER OF EVERYTHING WE DO AT SANOFI
What if we could create a more equitable patient experience?
At Sanofi, we believe every person should have the opportunity to be as healthy as possible. We aim to accelerate health equity so all patients have access to potentially transformative medicines. We realize that to enact meaningful change that we need to partner across organizations on these efforts. We appreciate the opportunity to partner in NHF’s Health Equity, Diversity & Inclusion Initiative and to work together to advocate for underrepresented communities. Sanofi has also introduced two programs to address health equity challenges with out-of-the-box solutions.
Annual Health Equity Accelerator Awards that support the efforts of US advocacy groups to address specific challenges impacting underserved populations. Our 2023 hemophilia-focused challenges are: 1) Provide education and support for people in rural areas, and 2) Improve diagnosis and care delivery for women, girls, or persons with the potential to menstruate with below-normal factor levels.
Health Equity Acceleration Community of Practice provides a forum that brings together 150+ US-based advocacy leaders across all therapeutic areas in which Sanofi engages to make connections, inspire learning, and share best practices.
What if we could advance science to redefine hemophilia?
Sanofi has a deep-rooted commitment to patient-centered research and development (R&D) and we realize we need partners to gather the insights that can help lead to impactful medicines. That’s why, along with other industry and patient advocacy groups, we’re excited to have launched PALADIN, a first-of-itskind R&D Consortium, which aims to accelerate medicines development regardless of disease within the U.S. ecosystem. We are proud to have NHF CEO Dr. Leonard Valentino serving on the Executive Committee.
We have also partnered with NHF on various other scientific research efforts including sponsoring the Gene Therapy & Novel Technologies Workshop and participating in State of the Science working groups. We look forward to supporting and engaging in NHF’s launch of a National Research Blueprint in early 2024.
Sanofi has also helped elevate treatment expectations in rare blood disorders by advancing science and developing first-in-class treatment options. Our quest to push the boundaries of scientific innovation continues as we explore new approaches for people with hemophilia A and B.
Learn more about our commitment at redefininghemophilia.com.
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Meet NHF’s 2023 TCS New York City Marathon Runners!
Jessica Furst Johnson is running for her sorority sister's 15-year-old son, Trenton, who has hemophilia. Jessica says, "I wanted to run for charity, but only if I could find a charity that would mean something to me, and I knew would be a good steward of my friends and family's funds. My sorority sister Kristin mentioned that NHF might still have entries, and I knew how helpful this organization has been to her and her son Trenton over the past 15 years. It was so exciting to think about getting to support her and this important organization".
Brother and sister duo, Michael Krieger and Kristen Garcia, are also running the TCS NYC Marathon on behalf of the inheritable blood and bleeding disorders community this year, and specifically Michael's sons. Michael is will be lacing up his running shoes because this opportunity serves as "another way to spread the word but also push me to do run that pushes my limits."
For Kristen, the marathon is also personal she says, "my goal for as long as I can remember has been to run the New York City marathon and after finding that I could run through NHF in 2021, I knew that I wanted to run the marathon as a member of the Red Tie Runners Team. Watching my nephews get factor injected into their ports every other day shows me how strong hemophiliacs are. My nephews are two of my favorite people in the world and I am ecstatic to run this marathon in support of them. I have been a big advocate for bleeding disorders ever since we learned about the diagnosis of my first nephew, and I want to continue being an advocate for them."
Stephanie Hansen will make the journey from Illinois to the Big Apple on November 5th as well. She's running on behalf of her 18-month-old son who was diagnosed with severe hemophilia A after discovering he had a gene mutation. "The bleeding disorder community has been wonderful to us and I would love to help spread the word and raise awareness."
We want to thank all of our runners, both past and present, for choosing to represent NHF and our community in this massive event. We can't wait to cheer on the 2023 Red Tie Runners this November!
Interested in running the 2023 TCS NYC Marathon with NHF? We have a spot for you! Email Riley Breen at rbreen@hemophilia.org for more information.
S A V E T H E D A T E
The Red Tie Soiree is moving to Chicago this year! On Friday, October 27th at the Chicago Cultural Center, we will host NHF's 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 tickets, visit bidpal.net/nhfsoiree23
