Midyear Check-In: 2025 Ask the Expert Series

Can you believe we’re already halfway through the 2025 Ask the Expert series?

We’ve had three fantastic sessions thus far, each delving into important topics for people with and affected by PSP, CBD and MSA.

In case you missed them, or would like a refresher, here’s an overview:

Sexuality and Intimacy for PSP, CBD and MSA

Gila Bronner, MPH, MSW, CST

Watch the full webinar here

The advancing symptoms of PSP, CBD and MSA inevitably change relational dynamics, including sexual and non-sexual intimacy. This can feel challenging and isolating, but there are ways to adapt to your new reality.

Certified sex therapist Gila Bronner offers practical and compassionate guidance on maintaining intimacy in relationships, starting with expanding the definition of intimacy. It's more than just sex, encompassing:

• Emotional/Spiritual: Love and trust

• Physical: Touch, hugging and cuddling

• Intimate: Sharing thoughts and feelings

• Erotic: Sexual attraction and activity

Focusing on non-erotic forms of intimacy can still offer deep connections. Social workers, psychologist and sex therapists can help you grieve these losses and find new ways to stay close to your partner.

Watch Gila’s webinar to learn ways to adapt to changes in sexuality and intimacy in your relationships.

Empowering Communication in PSP, CBD and MSA

Michelle G. Ganann, MS CCC-SLP

Watch the full webinar here

Communication challenges are common in PSP, CBD, and MSA, but there are effective ways to adapt. Speech-language pathologist Michelle Ganann introduces a range of Augmentative & Alternative Communication (AAC) tools that can help individuals stay engaged with those around them.

AAC includes all assistive methods that people use to communicate. Low-, medium-, and high-tech AAC options can help people with PSP, CBD or MSA based on their current and future needs.

• No-tech: Gestures and facial expressions

• Low-tech: Pen and paper, picture boards and whiteboards

• Mid-tech: Static devices with limited voice output, such as voice amplifiers

• High-tech: Eye-gaze or body-movement-operated devices with dynamic displays and voice output

Learn more about assistive voice technology from CurePSP’s “Advancing Communication: The Latest in Assistive Speech Technology” news post.

Check out Empowering Communication in PSP, CBD and MSA to learn more about accessing AAC materials and devices.

From Awareness to Action - Updates on CurePSP's Advocacy Efforts

Julie Balasalle, MSW, Nisha Quasba and Elizabeth Cooper

Watch the full webinar here

Policy change is a powerful tool in the fight against PSP, CBD, and MSA.Julie, Nisha and Elizabeth outlined our expanding federal advocacy efforts, highlighted policy changes under the new administration, and discussed top advocacy priorities.

CurePSP’s top advocacy priorities include:

• HEALTHY BRAINS Act: Bolster research into environmental factors that may cause Parkinson’s disease, atypical Parkinsonian disorders and more.

• Credit for Caring Act: A tax credit for working family caregivers.

• CONNECT for Health (or the Telehealth Modernization Act): Make Medicare telehealth flexibilities permanent.

Take action: Fill out this form to urge your Representatives to support NIH research that directly impacts the PSP, CBD, and MSA community.

Watch the full webinar to learn how CurePSP is advancing our pillars of care and cure through targeted advocacy.

Thank you for joining us so far for the 2025 Ask the Expert series. Each session has offered meaningful tools for improving life for people with PSP, CBD, MSA and their loved ones.

These conversations are just the beginning! We’re excited to bring you three more expert-led webinars in the second half of the year, continuing to explore the issues that matter most to the PSP, CBD and MSA community. Stay tuned!