GNEM Patients and their Caregivers "Chronic Loss/ Coping with Disappointment & Grief" w/ Dr. Gretchen Kubacky (click to download audio)
In keeping with its mission to improve the lives of people living with GNE Myopathy, The Neuromuscular Disease Foundation (NDF) announces the next in its series of Online Seminars.
Living with any chronic illness is difficult, but GNE Myopathy is especially hard. There are so many losses – loss of control, loss of health, loss of autonomy, and loss of hope – among others. Along with the loss comes deep disappointment and grief as you let go of your old self, old body, and ways of being, and envision even more losses in the future.
Additionally, life is complicated by how much dependence you may have on the people who provide you with care. This may feel hopeless, frustrating, or overwhelming at times. And still, there are ways to improve your coping skills so that these ongoing losses feel more manageable.
Gretchen Kubacky is a Los Angeles based health psychologist with a unique, integrative approach to health and healing that incorporates both the mind and the body. She has presented at NDF's Symposiums in the past and is always well received by the GNEM community.
GNE Myopathy Patient Day-Ivory Coast
Okama Rose, NDF Certified Patient Advocate, recently organized the first ever Patient Day on GNE Myopathy in the Ivory Coast, with support from NDF and in conjunction with #RareDiseaseDay. Nearly 50 people attended, including patients, family and caregivers, and an additional 80+ cases of myopathy were reached, thanks to support from national television and the BBC.
NDF Gala for the Arts
See more from the Gala for the Arts, here.
5th Annual Symposium on GNE Myopathy
See more from the 5th Annual Symposium, here.
GNE Myopathy Patient Day-UKhere.
NDF Ambassadors Host Awareness Dinner
See more photos from the event here.
Celine Talk Series Event - Madison Ave, New York
Celine brought awareness to the GNEM community during their Talk Series Event and donated a percent of a week’s worth of purchases made at their Madison Avenue location to the GNE Myopathy Community through NDF!
Patient Day on GNE Myopathy - Istanbul, Turkey
Click here, to see more photos from the 2018 Patient Day on GNE Myopathy (HIBM) in Istanbul, Turkey.
2018 GNEM Meeting in Italy
2017 GNEM Meeting in Israel
Click here, to see more photos from the 2017 GNEM Meeting in Israel.
'Eyes Wide Shut' Hosted by The NDF Ambassadors - Hollywood, CA
Click here, to see more photos from the NDF Ambassadors' event.
4th Annual NDF Symposium on GNE Myopathy - UCLA
Click here, to see more photos, watch presentations, and learn the impact of the 2017 NDF Symposium.
Celebrating GNEM And Rare Disease Patients - Ultragenyx 2017
Meeting GNEM Patients and Attending The World Muscle Society Conference, 2016 Spain
NDF Patients Day
New York Chapter
Patients Day Symposium - 2016 UCLA, Los Angeles. California
Images from Patients Day Symposium, August 31st- September 1st
The NDF Hosted National and International GNEM Patients and many Esteemed Scientists at UCLA, Los Angeles, California
Volunteer Appreciation Luncheon and Fundraising with Maz Jobrani
Ultragenyx Patients Day, 2016 Novato, California
Patients Day Celebration was held for all patients with Rare Diseases
Global Genes Conference, 2016, Huntington Beach, California
Attending the Global Genes Conference
International Conference on Neuromuscular Diseases in Toronto, Canada, 2016
Research Lab, Israel
Dr. Argov and Dr. S. Rosenbaum Conducting Research, Hadassah, Israel
2015 Patient Day Symposium
2015 Black and White Ball
October 14, 2015 at the Beverly Hills Hotel
2014 Black and White Ball
November 13, 2014 at the Beverly Hills Hotel