A FEW HIGHLIGHTS FROM OUR CEO
Dear Friends of NDF,
Scientific Research & 40 Hours of Video Content:
In spite of Covid delays, I'm pleased to report that the 2020 funding of our scientific studies towards gene therapy, support for the NIH's work on ManNAc, and progress on other novel concepts which aim to get us treatments, are near completion for this cycle and you can review the 2020 work yourselves in our Virtual Speaker Series, which provides address to many of the questions you might have from the scientists and other speakers directly.
Our 2021 grant cycle for scientific research is currently under review by our esteemed 2021 Scientific Advisory Team (which includes some brilliant new additions) and we look forward to announcing the awardees, by the end of March, at the conclusion of the Board of Directors' voting process.
NDF CLINICS:
Most exciting so far in 2021 is the launch of our GNEM-Specific, Multidisciplinary Clinic, in collaboration with UC Irvine, that provides much needed care for our patients at no cost to them. We are most grateful to our Board member, Dr. Tahseen Mozaffar, for helping us bring this to fruition.
Fundraising & Gala
A big shout-out to our supporters at Looking Beyond for our first generous grant of 2021 and all our supporters who've raised money online for us, too numerous to mention here, but there's something special in store for you at our Gala this year...
We look forward to welcoming you, once again, to our popular, Annual Gala this year on Sunday November, 14th, 2021 (Covid-19 restrictions, permitting), so please SAVE THE DATE!
With gratitude for your continued support,
Lalé J. Welsh,
Chief Executive Officer, NDF
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Congratulations to our 2020 Honorees |
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While weren't able to acknowledge our honorees in person at our annual gala last year, we do want to be sure to highlight the consequential contributions of our 2020 award recipients: NDF Founder, Gila Michael, on whose shoulders we stand today and longtime board members Doran Adhami and Michael Banayan.
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Gila Michael
Founders' Circle Award
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Michael Banayan
Advocacy Award
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Doran Adhami
Outstanding Service Award
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NDF Launches GNEM-Specific Clinic |
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GNE Myopathy Clinics & Emotional Wellness for families living with GNEM
Our Emotional Wellness Director, Carol Gelbard, LCSW is continuing to work with patients and caregivers across multiple programs. Here she recaps a session in which she discusses the importance of making space for both positive and negative moods and thoughts in order to move forward in 2021. Click below to listen to the podcast or read the summary here.
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The Doctor is in!
We are excited to announce that NDF has launched it’s GNEM Specific, Multidisciplinary Clinic in partnership with UC Irvine's Neuromuscular Center. Overseen by NDF Board and Scientific Advisory Committee member, Dr. Tahseen Mozaffar, this clinic is one of the many important ways that we serve patients while they wait for treatment and a cure. Click here to learn more about the clinic and to schedule an in-person or tele-health appointment.
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2020 Patient Fundraising Challenge Winners |
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NDF’s 2020 Allstar Campaign was a coordinated effort by GNEM patients to raise funds and awareness for NDF as a team. Thank you so much to all the patients who participated.
Special thanks to our winners; Imad for raising the largest amount of funds, Valenee for bringing the most new donors to our cause and special mention goes to Jennifer for her enduring and consistent support of our programatic and fundraising efforts.
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"We want to create a world where everyone, including people with disabilities, are free to be happy and accepted by the world."
~Being Purple
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Youngest Published Authors Books To Benefit NDF |
6 year old twins and children of GNEM patient, Prajakt from the U.K have made headlines for their original children's book about empathy and being different.
They have graciously opted to donate the proceeds of their book to NDF and we are profoundly grateful. To support these bright young stars click here t o order a copy for a young friend in your life.
You can learn more about these little world changers by visiting their website "Being Purple" which advocates for disability inclusion and raises awareness of disabled people. You can also watch their television interview here.
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WAY TO GO AMY!
We are excited to announce that NDF Patient Advocacy Program Manager, Amy Curran, has been named one of this year’s EveryLife Foundation
Rare Artist Contest Awardees!
To view her winning art work,
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GET INVOLVED
If you value the work we're doing, please consider becoming a sponsor.
E-mail us for more information.
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Another easy way you can can help NDF is through Amazon Smile. When you register with this link, a percentage of every purchase goes to help support NDF programs.
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There are many ways you can get involved and be a part of the team working towards a treatment for GNE Myopathy:
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- Join a committee
- Host an event
- Volunteer to help us with the Gala
- Introduce us to doctors and donors
Contact us: info@CureGNEM.org
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