Dear Friends and Family,
Valentine's Day kicks off our annual Love Some1 for Glut1 Campaign. Many of you have given to the campaign before and we are very grateful for your 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.
Since last year, I’ve continued involvement in the Glut1 DS video project. Three more have been developed including a video of the first diagnosed patient and family, Joseph Ruggiero; Kris Englestad, an expert on the genetics of the disease; and Dr. Darryl De Vivo, a renowned neurologist who discovered the disease in 1991 Glut1 videos link. These and the previous videos are also intended to help families and professionals learn about diagnosis and treatment since, for many, the disease is still unfamiliar. Early diagnosis and subsequent treatment with the ketogenic diet is the key to greatly improved outcomes.
JR (aka Joshua) update: JR has continued his wizardry in word and math games on his iPad. Every morning after he empties the dishwasher Paula and JR go over the results of the games from the day before. He crushes most of them. His other interesting passion is Queen and especially Bohemian Rhapsody. Here is a short clip that you might find enjoyable: JR's 2019 Love Some1 with Glut1 video
All the Best for 2019 and Thank you,
Rob and Paula Rapaport
The Love Some1 with Glut1 annual campaign is the primary awareness and fundraising event for the Glut1 Deficiency Foundation. It runs from February 14-28, Valentine's Day through Rare Disease Day, and it is an important opportunity to spread awareness and raise much-needed funds to help better serve the needs of the Glut1 community.
Please visit our website to learn more about Glut1 Deficiency and the work of the G1D Foundation.