In the month of February 2019 our rare disease community has been dedicated to bring meaning and increased global attention to all those who suffer from over 7,000 different rare diseases. "The zebra with its distinctive stripes, is the official symbol of Rare Diseases Month in the United States." NORD is promoting specific ways that our community can show our stripes, here is the link: https://rarediseases.org/
Spotlight on a Very Rare GNEM Patient:
|Photo credit, "Marvelousgotsole's" blog|
Rare Disease Month's GNEM Events Hosted by NDF
The NDF is hosting two events for GNEM patients in support of Rare Disease month.
1. Patient Huddle, a virtual support group that focuses on Cognitive Health and Well Being which is only for GNEM patients. Please register here to join: https://curehibm.org/news-events/upcoming-events.html
2. Online Seminar Coping with Disappointment and Grief, facilitated by Dr. Gretchen. You may register here for this session: https://curehibm.org/news-events/upcoming-events.html
Other News regarding GNEM Since My Last Blog
1. The NDF held its Gala in November 2018 and which was very successful in raising $.1.7 million towards its $2.5 million challenge grant.
2. In January, the NDF's Scientific Advisory Committee (SAC) met to review proposals submitted by GNEM scientists. The SAC will submit their reviews of these proposals along with their recommendations to the NDF's board for funding, which will take place in late February, 2019.
3. The National Institutes of Health (NIH) is still planning to start its multicenter ManNAc trial this year. Please check for the recruitment status and updates at this site:https://www.genome.gov/27567243/gne-myopathy-clinical-studies-at-nih/
"Fighting for a better quality of life is a constant. You need to wake up each morning and ask yourself, how can my life be improved." Surviving and Thriving with an Invisible Chronic Illness, Ilana Jacqueline