Get Ready for 2024 with RAWF! |
As we settle into a new year filled with possibility and the promise of change in the lives of our rare brain tumor survivors, we want to express our gratitude for your unwavering support of our mission. Together, we achieved major milestones in our patient advocacy, scientific research, and direct service efforts in 2023, as highlighted in our Year In Review.
Looking ahead, we are eager to increase our impact in numerous ways this year. We are developing an at-home sodium meter to help decrease the rate of hospital visits and a patient registry to empower our community through synthesized, patient-reported data; read more about both important initiatives below. While working towards these crucial advancements, we are also launching a survivor ambassadorship program to expand our existing service resources like our support groups and educational programming.
Read on for exciting updates on RAWF's growing impact. Onwards! |
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We're thrilled to highlight community member Dan K.'s Breakthrough t-shirt design, inspired by his own experience living with AVP-D (also known as Diabetes Insipidus). Dan channels challenge into change as an enthusiastic RAWF supporter, as exemplified by his unique design that you can order on a t-shirt or sweatshirt through January 31. Don’t miss your chance to wear this inspiring (and fun) design. |
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In my time living with this illness and learning to properly dose my medication, I have been hospitalized three times for low sodium. In one instance, my sodium was so low that I needed to be placed into a medically induced coma for multiple days in order to reduce the impact of brain swelling.
Properly dosing is like hitting the center of a dartboard, and doing so without at-home sodium monitoring is like doing it with your eyes closed. An at-home sodium monitor would help thousands of patients avoid dangerous and costly episodes.
— Dan K. Breakthrough Designer |
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Several days after my pituitary surgery...my thirst was unquenchable at all hours of the day and night. My mouth was so dry, I couldn’t talk without having a hard candy or ice in my mouth, or I had to sip fluids every few words. Eating was difficult because my mouth was so dry, so my diet changed to mostly fluids. I was panicking! I called my neurosurgeon’s office and was told I had central diabetes insipidus (AVP-D).
— Pat G.
Facebook Group Lead Administrator |
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| At-Home Sodium Meter Progress |
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In an inspiring collaboration with Giner, Inc. and the Children's Hospital of Philadelphia, we have made significant progress towards developing an at-home sodium meter. This technology holds the potential to revolutionize the monitoring of blood sodium levels, offering newfound hope to individuals managing AVP-D like Dan, Pat, and many more.
At the heart of this groundbreaking collaboration is Giner, Inc.'s innovative solid contact ion selective electrode (SC-ISE) technology. With its precision, stability, and impressive accuracy, they have developed a blood sodium test that stands shoulder-to-shoulder with established clinical blood analyzers, which are not readily accessible for home use.
Our shared commitment to transparency, scientific rigor, and innovation drives us forward as we enter Phase 2 of development. In addition to enhancing the prototype testing system and validation processes, we are setting our sights on a bold goal: commercialization in 2027. Together, we are not only improving lives today, but also shaping a brighter future in healthcare...one where a more accessible, precise means of monitoring health is a reality.
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Patient Registry Development |
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Led by Principal Investigator Nathalie Kayadjanian, PhD, we are embarking on a transformative project to create an international patient registry for rare hypothalamic-pituitary brain tumors. This registry will serve as a vital hub for caregivers and patients, allowing them to contribute valuable data and offering synthesized information on patient experiences, disease progression, and unmet medical needs. This resource will accelerate the development of effective treatments otherwise lacking in the current care landscape, as well as drive forward our mission to improve the quality of life for survivors.
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We are thrilled to be hosting a race team for the 2024 United Airlines NYC Half taking place on Sunday, March 17, 2024. We have ONE spot left on the team!
If you are interested in running and fundraising in support of our rare brain tumor community, please complete this inquiry form. Stay tuned for ways to support our team!
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