Bless all you families who are watching this video finding out your brother,sister, daughter, son, mom, dad, family member, or friend has been diagnosed with this terrible disease. My little brother had this disease lasted year and it changed our family and community forever. I can tell you, it will be hard to watch and experience this, but you will be okay. Just take it day by day and cherish every single moment you have with them, I’ve never experienced so much pain but I’ve also never experienced so much love. You can go on after this, they would want you to keep going on, spreading their message and living live to the fullest.
I would like to be the first to say thank you both, and all the people that you work with, for all your hard work and dedication to help families and their children to battle this, what seems to be a novel illness. Our children don't deserve this, and I pray to God that we find a cure for them someday. I see so many videos of families telling their stories and sharing the lives of their children. I just wish them the best in all their pain and sacrifice.
Hello. Please read the official statement from the International DIPG/DMG Registry here: dipgregistry.org/research/news/international-dipg-registry-cluster-statement/
We're so sorry to hear that, and would like to help in any way possible. Be sure to check out dipg.org/what-to-do-when-diagnosed/ and dipgwarrior.org/ to get in touch.
Can we please share the data or at least allow patients to access the database? Many patients are adding their personal data to the registry but are not allowed to access the database. Please share so that patients can make informed decisions regarding treatment.
Because the Registry contains data of patients who are still alive, the Registry has to follow strict privacy regulations. The information that is allowed to be shared (gender, age, types of tissue samples) can be found on the Registry website, dipgregistry.org/. These graphics/charts are updated often as new data is entered into the Registry. The intent of the Registry isn’t necessarily to help in choosing what treatments to choose in real time, as that should be a discussion that happens between the patients medical team and the patient/parents, but instead is used by researchers to study and help better understand how the diseases work. To be able to view all DIPG/DMG trials available, we suggest signing up for the DIPG/DMG Trial finder trials.dipg.org/login . The Trial Finder offers various ways to search, access, and save trials based upon your personal preferences like no other navigation or trial registry currently offered. It gives you the same data that the medical teams use to recommend trials.
Bless all you families who are watching this video finding out your brother,sister, daughter, son, mom, dad, family member, or friend has been diagnosed with this terrible disease. My little brother had this disease lasted year and it changed our family and community forever. I can tell you, it will be hard to watch and experience this, but you will be okay. Just take it day by day and cherish every single moment you have with them, I’ve never experienced so much pain but I’ve also never experienced so much love. You can go on after this, they would want you to keep going on, spreading their message and living live to the fullest.
I would like to be the first to say thank you both, and all the people that you work with, for all your hard work and dedication to help families and their children to battle this, what seems to be a novel illness. Our children don't deserve this, and I pray to God that we find a cure for them someday. I see so many videos of families telling their stories and sharing the lives of their children. I just wish them the best in all their pain and sacrifice.
Hi Is any update regarding clustering or any factors that could cause DIPG?
Hello. Please read the official statement from the International DIPG/DMG Registry here: dipgregistry.org/research/news/international-dipg-registry-cluster-statement/
thanks! Do you have any data across Europe? @@curestartsnow
😢😢😢my daughter is suffering from this disease. I hope someone get a cure for it .
We're so sorry to hear that, and would like to help in any way possible. Be sure to check out dipg.org/what-to-do-when-diagnosed/ and dipgwarrior.org/ to get in touch.
Have you tried to link ensest
Can we please share the data or at least allow patients to access the database?
Many patients are adding their personal data to the registry but are not allowed to access the database.
Please share so that patients can make informed decisions regarding treatment.
Because the Registry contains data of patients who are still alive, the Registry has to follow strict privacy regulations. The information that is allowed to be shared (gender, age, types of tissue samples) can be found on the Registry website, dipgregistry.org/. These graphics/charts are updated often as new data is entered into the Registry. The intent of the Registry isn’t necessarily to help in choosing what treatments to choose in real time, as that should be a discussion that happens between the patients medical team and the patient/parents, but instead is used by researchers to study and help better understand how the diseases work. To be able to view all DIPG/DMG trials available, we suggest signing up for the DIPG/DMG Trial finder trials.dipg.org/login . The Trial Finder offers various ways to search, access, and save trials based upon your personal preferences like no other navigation or trial registry currently offered. It gives you the same data that the medical teams use to recommend trials.
The Lord gave, the Lord has taken.