The HNF 2018 Patient-Centered Behavioral Health Summit was a first-of-its-kind event focused on emotional and behavioral well-being for the CMT community. HNF used the occasion to launch a new curriculum addressing the mental and emotional dimensions of living with Charcot-Marie-Tooth disease (a hereditary peripheral nerve disease that affects movement, sensation, and quality of life).

Keynote Session: Fuel Your Confidence

The two-hour workshop opened with an interactive empowerment session called “Fuel Your Confidence,” developed specifically for the CMT community by Lisa McCarthy, co-founder of The Fast Forward Group. The session explored the concept of the “inner critic” (the self-doubting voice many people carry) and offered strategies for replacing negative self-talk with empowering language. Attendees worked in groups and with partners to examine their own critics, insecurities, and self-judgments.

A live demonstration by Estela Lugo and Lainie Ishbia showcased the concept of “Clearing Power-Outages” and the importance of building supportive connections and friendships. Other themes explored during the morning included “Writing a New Story” and “Running Your Own Race.”

“We often hear so much in regards to the physical aspects of disease and disability, but very little on how it impacts our emotional well-being, which for many can be more devastating. Our goal with this summit was to provide strategic tools for attendees to incorporate into their daily lives for increased fulfillment and wellness across all avenues.”, Estela Lugo, HNF Medical Outreach Manager
“It felt very vulnerable sharing my critical inner thoughts with a stranger, but I’m so glad I did… it really helped me realize the power of identifying the ways in which I limit my own potential growth.”, Bernadette Scarduzio, HNF Social Media Coordinator

Breakout Workshop: Assertiveness and CMT

Lainie Ishbia, founder of Trend-Able.com (a lifestyle blog for people with disabilities) and a licensed social worker, moderated the Assertiveness workshop alongside her daughter, Zoe, and volunteers from the audience. The session covered the four types of communication through role-play and demonstrations, highlighting the value of assertiveness for improved social interactions.

Breakout Workshop: Nutrition and CMT

Alana Kessler, Registered Dietitian and Holistic Health Coach, opened her workshop with a guided meditation and an overview of its medical benefits. Attendees learned how nutrition and lifestyle choices can affect the nervous system and CMT symptoms. A comprehensive list of nerve-healthy foods was presented, followed by a group activity in which attendees built a full day’s menu using those foods.

Bernadette Scarduzio also presented on the holistic practice of Cupping Therapy, including a live demonstration and discussion.

Surgical Outcomes and Behavioral Health

Orthopedic Surgeon and CMT expert Glenn B. Pfeffer, MD led a talk on “How Surgery Outcomes Affect Behavioral Health.” Dr. Pfeffer described what makes a patient a strong candidate for corrective foot surgery and shared before-and-after case examples illustrating the connection between surgical results and emotional well-being.