Wrapping up a Wonderful Year – A Look Back
Histio Warrior, Ambassador, and dear friend, Ana, shared an exercise during our peer support groups in December that really resonated with me. It was a mind-mapping exercise for reflection on the year and looking forward into the future. I sometimes struggle to set a personal intention at the start of the new year, however, I am extremely invested in setting strategic goals for the Association. We take time to plan the year in advance. All so we can make thoughtful steps forward across all our programs and initiatives.
It’s very important to me that we are transparent with you. You are at the heart and center of everything we do. Your feedback, ideas, challenges, and wins are how we evolve and grow. You help define what programs are most imperative and help us develop new programs to bridge gaps.
Here are some of the key reflections of 2023 and next time, we will go into our goals for 2024. I hope this brings color to the IMPACT that YOU have achieved. We work together as a community, and we could not do this work without you.
Research in 2023
In 2023, the following took place or were developed:
- Identified partnerships to help research studies by sharing the opportunity, providing patient perspective on the study design and beyond, and fostering connection to learn information as it comes out to share with the broader community.
- We partnered with the INTO-HLH Registry, led by a team at Cincinnati Children’s Hospital in Ohio, under the leadership of Michael Jordan, MD. The study aims to learn about people diagnosed with HLH, MAS, and CRS. It‘s the first study of its depth, in North America specifically.
- The University of Alabama at Birmingham is also conducting a natural history study under the leadership of Gaurav Goyal, MD. This follow up study is for all histiocytic neoplasms and seeks to learn more about quality of life, related health conditions, long term effects of the disease and treatment. It is the first of its scope and breadth of histiocytic neoplasms.
- In 2023, we funded 4 research projects at $50,000 USD each. The projects focus on Langerhans cell histiocytosis, Rosai Dorfman Disease, and hemophagocytic lymphohistiocytosis. The projects are novel. They seek to identify new opportunities for improvement in knowledge and understanding of histiocytosis at the molecular level across. Covering neurodegeneration, genetics, and treatment opportunities. (More information on this in our February Blog Post)
- We launched a Junior Investigator Travel Scholarship through the generosity of the Ingrassia family, longtime supporters of the histiocytosis community. This scholarship program partners with the Histiocyte Society to offer travel stipends to junior investigators who may not yet have support from their institutions to travel to the Annual Meeting of the Histiocyte Society. The investigators must have submitted an abstract and be prepared to present at the meeting.
- One related condition found with histiocytosis is Arginine Vasopressin Deficiency (AVP-D), formerly called Diabetes Insipidus (DI). Through a community survey led by a team in Switzerland, they found a challenge with the naming of DI. This caused it to be commonly mistaken for diabetes mellitus and creating challenge with treatment and management. Now called Arginine Vasopressin Deficiency, there have been additional guides, studies, and support programs that we have been collecting, curating, and sharing with the AVP-D community!
- We have been keeping our eyes on the latest publications and connecting with the investigators and clinicians who are at the forefront of research. Whenever possible, we interview the authors of the papers to present a summary of the work in their own words as a supplement to the papers themselves. We will continue this in 2024!
Education/Emotional Support 2023
- We continued to host our webinars, leaning into topics you requested including pathology, grief, transition of care, genetics, diagnosis.
- Podcast stats – 87% of our listeners discovered us in 2023!
- The Beyond the Diagnosis podcast was shared quite a bit: 53% by direct link, 17% on Instagram, 17% via text, 7% via Facebook and 6% other. We were in the top 10 podcasts for 70 fans, top 5 podcast for 62 fans and #1 podcast for 31 fans!
- Listens were +145% and Followers were +62%
- YouTube Stats – 104 new subscribers, 10.8K views, 172 likes and 332 shares.
- In September, we hosted the Histiocytosis National Conference in NYC and online, through partnership with Memorial Sloan Kettering Cancer Center.
- Histio Student Scholarship Program
- 6 meetings with 17 Patient Advocacy Groups around the world, focused on histiocytic disorders.
- In 2023, we continued to host our peer support groups; we met new family members and patients, we shared our hopes and challenges with one another, and friendships blossomed as the year went on. This program has been amazing for the community and the staff – creating connections within this rare community!!
- In addition, we opened our Spanish Language Support Groups in 2023, hosted by a Histio Ambassador. The groups are just like our peer support calls, but offered in Spanish.
- The loss of a loved one or the challenge of the histio journey can bring about grief, sadness, and a sense of loss. To help the histio community navigate these difficult times, we launched our Grief Support Groups, hosted in 2023 by a Certified Grief Counselor. In 2024, we will continue these calls, with our newest host who is not only a Certified Grief Counselor and Trauma Counselor but has been impacted by histiocytosis through her family so understands this journey.
We can’t stop raising ‘Awareness!’
- Care Bag Program expanded – new institutions requested bags!
- Physician Letter Writing campaign – 52 letters sent!
- Blue Ribbon Run
- Youth Ambassador Program / Histio Ambassador Program
Thank you so much for joining us for ALL that happened in 2023. We look forward to what this year brings, and we will go through our goals for 2024 on the next blog post.