CurePSP Provides Resources and Education to Clinicians at AAN 2024

Apr 25, 2024 Courtney Malburg

Last week the CurePSP team headed to Denver, Colorado for the American Academy of Neurology’s (AAN) Annual Meeting. The AAN Annual Meeting provides a space for neurologists from around the world to connect and learn about clinical and scientific developments in the field.

This was the second AAN meeting that CurePSP has been a part of, and it was full of productive conversations with neurologists, allied health professionals, non-profit organizations researchers and pharmaceutical and biotech companies in the field. The team was able to provide education on neurologists and information on clinical trials and CurePSP services. The meeting was also a great chance to speak with clinicians who are already seeing patients with PSP, CBD and MSA – so many care teams were thrilled to find resources that they can pass along to their patients! A cognitive neurologist from Canada described the gaps in support for patients with PSP, CBD and MSA in the country, and after letting them know what programs and support that CurePSP offers, they were excited to get back to their clinic to let patients and families know about our virtual support groups.

The team got a chance to connect with so many of our partners, including members of our Centers of Care network, Mission MSA and the Association for Frontotemporal Degeneration (AFTD). Seeing partners at events like AAN is crucial to continuing CurePSP's mission; there is strength in collaboration and increasing the number of voices heard in this disease space.

The CurePSP booth was next to the Parkinson’s Foundation’s booth, which made for a fun promotion of the brand new online course for healthcare professionals, "Caring for Your Patients with Atypical Parkinsonism." The online course was developed in partnership with Parkinson’s Foundation and will educate healthcare professionals on the nuances and complexities of PSP, CBD and MSA. 

Some members of the CurePSP team were even able to squeeze in some sessions at the AAN. It was great to see so many neurologists dedicated to improving the patient experience and to further professional development:

Neuro-Palliative Care: Maximizing Quality of Life in Serious Neurologic Illness:

In this session, three different neurologists shared case studies that show how palliative care can benefit those with neurologic diseases. It was a great reminder of how palliative care can help ease symptoms for people with PSP, CBD and MSA and provide information and education for loved ones. One major takeaway from the session was that it’s never too soon to talk about palliative care!

Check out our resource, “Understanding Palliative Care and Hospice Care,” to learn more about palliative care and how it differs from hospice.

Meeting the Moment: Mastering Difficult Conversations in Serious Neurologic Illness:

This talk, given by two neuro-palliative specialists, was about improving person-centered medical care through empathetic and compassionate communication. When providers take time to build rapport, establish a relationship and better understand the patient, it builds trust and creates a safer space. Having this relationship makes discussing tough topics like diagnosis, progression and prognosis much easier for everyone. The session leaders shared practical tools and tips that providers can use to better understand the patient experience and enhance care for people with these diseases.

The CurePSP team left AAN motivated by all the neurologists dedicated to improving care and finding a cure for those with PSP, CBD and MSA. We are excited to continue partnering with them to improve the lives of those with these diseases.