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.
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.
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.
