Our Emotional Wellness Clinic, offers GNEM patients an evaluation and needs assessment session with our Emotional Wellness Director.  These sessions provide a mental health “check in” to help determine appropriate recommendations for further supportive services.  The consultation may be held via telephone or video session.  Through this service patients learn how support services can be beneficial to help manage and cope with their disease.

What is Emotional Wellness?

Emotional wellness focuses on one’s ability to understand, share and manage our feelings. It is also affected by the degree to which we can cope with life challenges. How we deal with stress can have a direct effect on our health, so we want to help patients find the necessary ways to manage the stressors that come along with having a chronic, progressive disease, such as GNE Myopathy.

Why are we using the wording “Emotional Wellness”?

  • To come from a strength-based perspective
  • To empower patients to address their emotional wellness as well as their physical wellness
  • To take the stigma out of needing a mental health service
  • To support patients who are having some understandable reactions/feelings/responses to coping with GNE Myopathy
  • To help patients learn to cope more effectively to mange one‘s emotional, as well as physical, health

Why are we using the wording “Emotional Wellness”?

Ultimately, we want to empower patients to:

  • Implement self care plans
  • Adopt more adaptive coping skills
  • Access interpersonal support
  • Learn how therapy can be useful
  • Help establish supportive care resources

GNE Myopathy patients can schedule an appointment with Carol below.

Schedule Appointment
Photograph of Carol Gelbard, LCSW

About Carol Gelbard, LCSW

Carol Gelbard received her master’s degree in social work at UCLA and has more than 15 years of experience performing individual, family, and group therapy in hospitals, schools, and private practice settings with people of all ages. She was a member of the NDF board for 8 years, has been actively involved in our Patient Days since 2015, and has led patient and caregiver groups at our Symposia. In Spring 2020 she facilitated a Patient HUDDLE focusing on managing anxiety and practicing self-care during the COVID-19 pandemic. She is the Director of our Emotional Wellness program and works collaboratively with our multidisciplinary team to help patients develop supportive care plans to address their overall wellbeing.

Schedule Appointment

Resources

Peer-to-Peer Support Program

We are exploring interest in launching a Peer-to-Peer Support Program in order to connect patients in the GNE Myopathy community with each other.

We know from experience that many patients and family members are looking for someone to connect with who can relate, understand and give suggestions/advice regarding various questions and challenges the GNE Myopathy community encounters throughout their disease journey.

It has been proven that peer support can be helpful through the sharing of experiences, information, emotional support, encouragement and can help decrease one’s sense of isolation. Plus, the mutual reciprocity of the relationship can foster shared problem solving, with both parties receiving and giving help on shared concerns.

Ultimately, we hope that this will help increase a person’s confidence in managing the disease, and increase one’s social support and understanding of self-care in order to help cope with the challenges faced by GNE Myopathy patients and their loved ones.

We plan to explore training opportunities for interested participants to receive guidance on supporting others under the supervision and monitoring of NDF’s Emotional Wellness Director Carol Gelbard, LCSW

We need patients’ input in order to make this as successful, productive and meaningful as possible. 

We have questions about who might be interested in participating, how we can best match people and what key factors are most important to people when considering matches.

Please fill out this brief survey using this link to express your possible interest in being a part of the Peer-to Peer-Matching Program and provide your invaluable input about the important variables we should be considering while building this program.

It is important that we get as many responses as possible, so that we can gauge interest in our pursuing this effort. Please note that information you share in this survey and/or program will not be used for any other purpose(s) and submitting this survey does not, in any way, commit you to participating in the future.

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