CATEGORIES: CMT Summit
behavioral health

HNF Hears You

by | Dec 22, 2018 | 0 comments

We shed the light on Emotional and Behavioral Health. The HNF 2018 Patient-Centered Behavioral Health Summit was one-of-kind: HNF launched a new curriculum.

Keynote Speaker: Fast-Forward CoFounder, Lisa McCarthy

  • The two-hour workshop opened with an interactive empowerment session called, “Fuel Your Confidence” which was developed specifically for the CMT community by highly-accredited thought leader and co-founder of The Fast Forward Group, Lisa McCarthy in collaboration with the HNF team.  
  • The energetic discussion dove into the concept of an “inner critic”; the cynical voice we all carry in the back of our minds and the key strategies we can use to replace negative language with empowering self-talk.
  • Attendees worked in groups and with partners to deconstruct their own critics, insecurities and self-judgments.  
  • A live demo was performed by Estela Lugo and Lainie Ishbia to showcase “Clearing Power-Outages” and the importance of creating supportive connections and friendships.  
  • Other themes explored throughout 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 workshops; Assertiveness & CMT, and Nutrition & CMT, topped off the day with interactive discussions and exercises for improving nutrition and social interactions.

  • Founder of Trend-Able.com (a lifestyle blog for people with disabilities) and social worker, Lainie Ishbia moderated her Assertiveness workshop with daughter, Zoe along with volunteers from the audience. The four types of communication were explained and role-played during an entertaining set of demonstrations with plenty of laughs and participation. Attendees learned the importance of assertiveness and healthy applications for improved social interactions.  
  • Alana Kessler, Registered Dietitian and Holistic Health Coach, began her workshop with a guided meditation and explanation of its medical benefits. Attendees were informed on the ways nutrition and lifestyle can affect the nervous system as well as CMT symptoms. A comprehensive list of nerve-healthy foods was presented along with their unique benefits on health. Attendees were then asked to divide into groups of 3-4 people and create a full day’s menu using the foods discussed. Each group presented their creative dishes and guilt-free meals in a fun and mouth-watering finale.  
  • Bernadette Scarduzio presented on the holistic treatment of Cupping Therapy with a live demonstration and interactive discussion.

 

Orthopedic Surgeon and CMT Expert, Glenn B. Pfeffer, MD  

  • He led the room with an insightful talk and presentation on “How Surgery Outcomes Affect Behavioral Health.”  
  • Dr Pfeffer identified what makes a patient a strong candidate for corrective surgery with some dramatic before-after cases.

Learn more on this topic

Related Blog Posts

CMT Kids Video

The Hereditary Neuropathy Foundation is currently seeking 10 second video clips of CMT patients under the age of 16, performing daily activities.

Summit Panelist Spotlight: Mitchell Warner

Bracing is used in the management Charcot-Marie-Tooth to support and hold a part of the body compromised by muscle weakness, muscular atrophy, sensory impairment. Bracing is also used to help correct skeletal deformity.

Summit Panelist Spotlight: Brent Baker

With respect to CMT, Dr. Baker’s team has collaborated with Drs. Michael Sereda and Klaus Nave of the Max Planck Institute for Experimental Medicine (MPI) to utilize their CMT1A transgenic rat and established the initial CMT1A rat colony in the United States.

Join the conversation

Leave a Comment

0 Comments

Submit a Comment

Your email address will not be published. Required fields are marked *

Newsletter

Join for notifications on events, campaigns, & news