Dear Friends and Family,
Valentine's Day starts our annual Love Some1 with Glut1 Campaign. Many of you have given 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.
As several of you know, JR has had a very challenging year and we are very grateful for his continued recovery from testicular cancer which involved extensive chemotherapy, surgical removal of a testicle and removal of a large football-shaped mass in his abdomen. Some months after this arduous journey JR has become joyous again, singing upon awakening and sometimes during much of the day.
Prior to JR's cancer we had agreed to work on a video covering his Glut1 journey that also includes the early stages of his cancer diagnosis and treatment. This seven-minute video can be found in the link below and includes some familiar music at the end that you may enjoy.
JR was the first Glut1 patient to receive chemo and surgery for this type of cancer. Our Glut1 doctors worked closely with the oncologists, dietitians and surgeons to ensure safety during JR’s chemotherapy, surgery, and post-surgery. We are very grateful for the outpouring of support that we received from the Glut1 community and the invaluable medical input we received from the professional community. This reaffirms our commitment to the importance of the Glut1 Foundation and all the important work that it does.
This past year, the Glut1 Foundation continued with another very strong year highlighted by development of a long-term research plan called Research Compass. This year, all of our donations will be dedicated to this research program.
Please also note that JR appears at about the 15-minute mark of the Foundation's annual video on this page, "Shine like Some1 with Glut1".
JR, Rob and Paula Rapaport
Each year, from Valentine's Day to Rare Disease Day, the Glut1 Deficiency Foundation hosts the Love Some1 with Glut1 campaign. It is an important opportunity to increase awareness and educate others about this rare disease while raising essential funds to help better serve the needs of our patient community through our mission programs.
In addition to our regular activities, we are working on some big and important goals for 2022
- host our 9th family conference to bring families together to meet, share, and learn
- host our 2nd scientific convening for researchers and clinicians to exchange knowledge and ideas
- launch our Research Roundtable program to build a collaborative research network
- begin implementing and funding our newly developed patient-led Research Compass
- launch a natural history study to better understand life-long patient experiences
- expand our educational exhibits to reach and teach new audiences of medical professionals
- create a new website to serve as a hub for information, support, connection, and hope
Shine Like Some1 with Glut1
learn more about Glut1 Deficiency
from our brochure here