COVID-19 can't and won't stop us!
To deal with the COVID-19 pandemic, the U.S. health care system acted urgently to change regulations, reimbursement models, patient and beneficiary benefits, and the way care, itself, is delivered. NDF took note, and acted swiftly to comply; pivot its programs and deliver novel results while maximizing its resources in the following ways:
- We've kept our finger firmly on the heartbeat of healthcare & biotechnology and extended NDF's options by connecting with the world's best experts on gene therapy and other approaches during best of breed Industry conferences on the leading edge of technology to advance our partnerships. (For a list of Conferences attended by our CEO and key advisors, see below.)
- We reinvented our annual symposia into the NDF Speaker Series, which maintained critical discourse among scientists and actually expanded our reach.(see links below for our growing library--on demand and free for all.)
- We listened to our patients and immediately began to create a multi-disciplinary, GNEM-Specific Clinic, accessible virtually and in-person to our patients in tandem with HIBM expert, Dr. Tahseen Mozaffar and the University of California, Irvine. (Follow our progress below by listening to his talk on this Beta Program--coming soon!).
- We added an Emotional Wellness Clinic to our list of programs to help focus on coping with increased challenges and how best to live with HIBM, as we work towards a cure.
- Finally, we've also added a support group for children of people affected by HIBM, led by 2 very brave and committed young people who wish to support their peers. If you are related to a patient and would like to join any of our support groups designed for YOU, e-mail us at info@curehibm.org / join us here
While we continue to work on behalf of patients everywhere, we hope that this unprecedented time finds you and your families safe and in good health. Please continue to be in touch and we will do the same.
Stay safe everyone!
|
|
After 8 weeks of hearing from many of the scientists working on GNEM, we are transitioning for the month of July to more patient driven presentations. We hope that you will continue to join us for topics that, while geared toward our patient community, promise to be interesting and informative for anyone attending. We plan to pivot back to more scientific presentations in August and September. You can visit our
video library
to catch any presentations you may have missed, FREE, ON DEMAND and ANYTIME you like.
|
|
Past Presentations
Click on an image to view
|
|
2020 NDF Scientific Research Program
|
|
NDF continues to be the world leader in funding diverse and groundbreaking research projects devoted to potentially curative treatments for GNE Myopathy. Our team of new and existing scientific investigators is growing at an impressive rate, and their dedication to data-sharing and genuine collaboration is in keeping with NDF’s requirements for grant awards and proving to be of great value to all. You can see a current list of NDF's research being funded
here and you can download
podcasts and other scientific
presentations anytime on demand, here.
Our next internal scientific meeting is scheduled for July 30th and we'll be sure to circle back with relevant updates. In spite of travel restrictions, scientific/biotech meetings officially attended by NDF this year so far include:
JP Morgan
,
MDA
,
BIO
and our CEO will be speaking at the
WWGNEM (India)
and the Global Genes Conference this coming Fall.
|
|
NEW NDF PROGRAMS LAUNCHED
|
|
NDF is proud to announce the addition of its
Emotional Wellness Clinic facilitated by Carol Gelbard, LCSW. This program is now active and Carol is accepting appointments. Please contact
cgelbardlcsw@curehibm.org
|
|
NDF's UNITED YOUTH has launched a new and unique Facebook group thanks to chairs Leah & Ariella, both of whom have a parent affected with GNEM. This Facebook group offers a safe space for children of neuromuscular disease patients (ages 13-23) to meet and connect over their shared experiences. To join this group or learn more, email
Youth@curehibm.org
/
join us here
|
|
 |
"NDF Talks..." New Episode Available!
In NDF Talks latest episode, get to know Gary - caregiver to a GNEM patient whose experience at NDF's Symposium changed the way he cares for and thinks about the patient he works with.
|
|
|
|
NDF's Cognitive Health & Well-Being Patients' HUDDLE
Sunday, August 2nd, 2020
9 AM Pacific Time
NDF's next monthly
Patient HUDDLE will take place on
Sunday, August 2 at 9 am PT. This Patient HUDDLE will be an OPEN FORUM for discussion. This support group will be confidential, giving patients an opportunity to discuss any topic in an open, safe & non-judgmental forum.
Register Here
|
|
|
|
World Without GNE Myopathy is hosting an online patient day in India on July 25th.
Click on the image to view the agenda which includes a presentation by NDF's C.E.O Lalé Welsh.
E-mail wwgm.india@gmail.com to register
|
|
|
|
|
|
|
|
