The Start of an Exciting Year – A Peek Forward
Last blog post, we reflected on 2023 – a year with many accomplishments in the histiocytosis research and community outreach areas. We are so grateful for YOU and all you have made possible! As we rounded into this new year, we identified very specific areas of our mission that we wanted to put extra emphasis on. We develop these specific aims based on feedback from you, opportunities that have presented themselves, and as some of the projects we have been working on that are evolving and growing.
Research in 2024
- In 2024, we will strengthen our partnerships with research studies and opportunities.
- For the INTO-HLH Registry, we maintain our seat on the Steering Committee to bring patient-community perspective and consistently meet with our Patient Advisory Subcommittee to determine ways to increase communication back to those who consent to the registry and those who interested.The University of Alabama at Birmingham Follow-up Study plans to remain strong in their recruitment of those impacted by histiocytic neoplasms to learn more about the natural history of the diseases and to evaluate long term care needs. We are expanding our communication, relaying updates on findings, sharing deeper dives into publications, and introducing you to the study team throughout the year.As our Annual Research Program surpasses funding 200 grants, we aim to grow our opportunities and seek to fund 4-6 grants this year through the program.Another way we have supported research is to interview investigators and publication authors on their work to bring these important discoveries directly to the community. We will grow this effort in 2024, in partnership with the Histiocyte Society.
- The Patient Advisory Board for Clinical Trials is a new initiative that we are launching in partnership with the North American Consortium for Histiocytosis (NACHO) and the Coalition for International Histiocytosis Patient Support (CHIPS). We will share more about these efforts next month, following an important and groundbreaking workshop taking place on February 1-2, 2024.
- As mentioned above, the Histiocytic Disorders Workshop will be a catalyst for the future of research, therapy, DEI, clinical trials and studies, and harmonization of adult and pediatric research projects. We are honored to be on the steering committee for the workshop and to include some of the patient-family community as spokespersons. The Association will be very active in the workshop, including holding a talk during one of the segments.
- Our Annual Research Program will once again open around April, accepting project proposals from investigators around the world who are researching histiocytic disorders. The applications are due by July and the Histiocyte Society Scientific Committee reviews them over the late summer/early fall. The Association provides funding in the amount of $50k USD for as many projects as we have funding for, made possible by the generosity and support of YOU and the histio community!
Education/Emotional Support 2024
- One major area of focus for us is the expansion of our support of health care provider education. We know that there are many gaps that exist for those diagnosed with histiocytosis, some of the largest gaps include:
- Limited providers who treat adult patients. We are eager to find ways to help increase access to information, to increase web-based provider education opportunities, and working with our partners at the Histiocyte Society to increase visibility of their efforts. Unclear process and guidelines for transitioning care from pediatric to adult. We have begun to establish relationships with providers and institutions who have strong cancer transition programs and leaning on GotTransition.org in the hope that we can begin to develop guidelines.
- Need for increased access to expert consultation when diagnosing a histiocytosis patient for the first time, or if the health care provider has limited experience with any of the histiocytic disorders.
- We are thrilled to continue hosting our peer support and grief support groups in 2024 and are eager to evolve these as we continue to aim for growth in our reach of both programs. If you haven’t signed up to join a call, we encourage you to at www.histio.org/peer-chats.
- We are taking to the road and hosting our Regional Meeting and Networking events again in 2024. The in-person connections are extremely important and to hold these events in regions across the United States serves to bring us closer together. Stay tuned for more information about our in-person meeting plans, and for information about our virtual education sessions which we will continue to host all throughout the year for families around the world.
- Our Care Bag program has supported more institutions in 2023 than years prior and we aim to grow that even further. Through efforts of the team and community to identify new institutions that treat adult and pediatric histiocytosis, we can provide information and support through our care bags and help ensure no one feels alone.
- Our Histio Student Scholarship remains a very strong program for us, with each year bringing more applicants than the last. We are excited to launch the program again in the early spring and excited to meet all of you who apply and engage with the program! If you are a college student or know a college student impacted by histiocytosis, please learn more about the scholarship program and consider applying! https://histio.org/resource-overview/scholarship-program/
- As a layer onto this program, in 2023, we launched the Ingrassia Junior Investigator Travel Scholarship, with gratitude for a family in our community who are passionate about education. The goal of the scholarship is to ensure the future of research for histiocytosis and to create meaningful pathways for junior investigators to collaborate with their peers, learn, share, and present their work at the Annual Meeting of the Histiocyte Society. It will be important for us to grow opportunities to connect with these scholarship recipients in 2024 as we head into year 2 of the program!
Awareness & Advocacy 2024
- We will once again take a very active role in raising awareness and advocating for policy change throughout the year, whether it be on Captial Hill, lobbying our state and local representatives, participating in conferences holding awareness booths, or joining local events to raise awareness for histiocytosis. There are events all throughout the year, so the aim is to remain aware of these opportunities and dedicate some time each month, whether it is signing on to an important bill petition or engaging in Rare Across America again, every little action matters. We appreciate everyone who acts alongside us – if you have a personal interest in advocacy and/or awareness, please reach out at email@example.com to share your interests and find out more ways to get involved.
- September is Histiocytosis Awareness Month, and we hope this year will bring even more participation and activity. In the late summer, we will begin sharing ways you can raise awareness in your area, raise funds for research and programs through community fundraisers, and engage in community activities around the world!
- The Histio Blue Ribbon run will continue this year, as well as many other community events such as the Histio Hike Shenandoah which is entering its 15th year! The Hike provides an opportunity to spend a weekend with other families impacted by histiocytosis, and whether you enjoy hiking or prefer to stay back at “base camp” to do crafts and connect, there are activities for everyone at every age! Look for local events by staying tuned into our newsletters, website, and social media – you can also connect with us at firstname.lastname@example.org to find out about upcoming events or to host your own!
We look forward to sharing more about these activities and goals in the coming weeks as the year really gets started. It is most important to us to know what is most important to you – our north star! We will be seeking input and feedback from you on various programs and services we offer and have a plan to get to know our community more closely. If you have questions and/or want to connect, please contact us at +1-856-589-6606 or can email me directly at email@example.com. You are not alone.