Dear Friends and Family,
Valentine's Day kicks off our annual Love Some1 for Glut1 Campaign. Many of you have given to our campaign before and we are very grateful for your past contributions. We also know that you are asked to give to many worthy organizations and understand if you choose not to give at this time.
JR continues to have speech and social struggles but otherwise has had a good and healthy year. He is taking piano lessons and will add guitar soon. He is enjoying work with a personal trainer once/week and here is a quick video link.
The Glut1 Deficiency Foundation has had a very productive year. We just received a $450,000 grant from the Chan Zuckerberg Initiative's (CZI) Rare as One Project to establish a collaborative research network (press release). We are very grateful to be selected as one of 30 patient-led organizations to receive this grant. This is truly an amazing opportunity and not possible without the past help of the donors and volunteers who supported the Foundation's mission. The funding we'll receive through Rare As One is dedicated to strengthening our framework, capacity, and sustainability for creating and maintaining a collaborative research network. It will be up to our donors to continue to provide funding for our programs and the research projects we will be identifying and supporting.
We’ve also developed a new Glut1 educational video with the help of Osmosis. If you have seven minutes to watch, it provides an easy to understand description of Glut1 Deficiency and we believe it will be a valuable tool in our mission of raising awareness and improving education.
We’ve also contributed to an entertaining video of Glut1families in the U.S. and internationally. JR appears at 6:52 minutes (video).
All the Best for 2020 and Thank you,
JR, Rob and Paula Rapaport
The Love Some1 with Glut1 annual campaign is the signature awareness and fundraising event for the Glut1 Deficiency Foundation, running from February 14-29, Valentine's Day through Rare Disease Day. It is an important opportunity to educate others and raise much-needed funds to help better serve the needs of our patient community through our mission programs for increased awareness, improved education, advocacy for patients and families, and support and funding for research.
learn more about love
messages from the heart of our community
learn more about Glut1 Deficiency
our new video to help raise awareness and improve education
please visit our website for more information