Silicon Valley Team for Loeys-Dietz
Hi!
We are a Palo Alto based team. We are six boys in sixth grade at Frank Greene public Middle School. Our friend, Arno, who is part of the team, has Loeys-Dietz, a genetic disease. Even though he is refrained in lots of activities, and lives with some physical pain, we see him being very courageous and resilient in his daily life. Unlike other kids, Arno is still lucky to have some of the best care in the country (Stanford hospital). We would like to help kids like him or those who have even more severe cases. It is a very rare disease, fewer than 1000 people have this condition and therefore, these kids barely receive funding. Loeys-Dietz syndrome is a disorder that affects the connective tissue in many parts of the body, the skeleton and specifically leads to risks of the aorta dissection. The disease was discovered at John Hopkins University in Baltimore.
We have a goal to raise 10,000 dollars for less privileged families with kids that are diagnosed with Loeys-Dietz syndrome to travel to the bi -annual conference that takes place in Baltimore this June 2020. This meeting is very important to the LDS community, because it's an opportunity to get updated information from the doctors and scientists for this very complex disease. The expenses can cover traveling, hotel and food.
Want to join us in making a difference?
The Silicon Valley Team: Arno Fulpius, Max Lebeck, Aryav Singh, Lucas Tung, Tyler Cheung, and Dylan Liao.
More information about Loeys-Dietz Syndrome Foundation:
www.loeysdietz.org
We are a Palo Alto based team. We are six boys in sixth grade at Frank Greene public Middle School. Our friend, Arno, who is part of the team, has Loeys-Dietz, a genetic disease. Even though he is refrained in lots of activities, and lives with some physical pain, we see him being very courageous and resilient in his daily life. Unlike other kids, Arno is still lucky to have some of the best care in the country (Stanford hospital). We would like to help kids like him or those who have even more severe cases. It is a very rare disease, fewer than 1000 people have this condition and therefore, these kids barely receive funding. Loeys-Dietz syndrome is a disorder that affects the connective tissue in many parts of the body, the skeleton and specifically leads to risks of the aorta dissection. The disease was discovered at John Hopkins University in Baltimore.
We have a goal to raise 10,000 dollars for less privileged families with kids that are diagnosed with Loeys-Dietz syndrome to travel to the bi -annual conference that takes place in Baltimore this June 2020. This meeting is very important to the LDS community, because it's an opportunity to get updated information from the doctors and scientists for this very complex disease. The expenses can cover traveling, hotel and food.
Want to join us in making a difference?
The Silicon Valley Team: Arno Fulpius, Max Lebeck, Aryav Singh, Lucas Tung, Tyler Cheung, and Dylan Liao.
More information about Loeys-Dietz Syndrome Foundation:
www.loeysdietz.org
Co-organizers (5)
Aryav Singh
Organizer
Palo Alto, CA
Loeys-Dietz Syndrome Foundation
Beneficiary
Arno Fulpius
Co-organizer
Dylan Liao
Co-organizer
Max Lebeck
Co-organizer
Nicolas Fulpius
Co-organizer