I am riding to honor the memory of our beloved daughter Jobie and to continue the research project we established at Dana Farber in 2022 called the Jobie Project. The Jobie Project is an effort to develop therapies to treat, and ultimately, cure high grade pediatric gliomas in kids with NF1. Dana Farber is among the world’s leading research institutions and brings to bear a best in class capability for modelling complex tumors through CRISPR and other gene editing tools. For the Jobie Project, DFCI is focusing on why some low grade pediatric gliomas (the vast majority for kids with NF1) transform into aggressive and deadly high grade tumors. Our lead researchers believe one of the keys lies in the preponderance of alternations in the CDKN2 A/B genes in NF1 tumors. By isolating this CDKN2 A/B gene, they hope to learn how the other mutations function (Jobie, sadly, had five gene mutations) and hopefully isolate the ones that drive the tumor to the high grade status.
To date the Jobie Project has funded over $200,000 in research at Dana Farber, led by the lead investigators Mimi Bandopadhayay and Rameen Beroukhim. The Jobie Project has also funded another nearly $350,000 for coordinated and complimentary research at UCSF.
There is a great deal of interest in Jobie’s specific tumor – her’s was very rare and, with five mutations, very complex. But, cracking the code of what made her tumor so aggressive can unlock secrets applicable to a wide range of pediatric brain cancers. We are through Phase 1 of the Jobie Project, and it’s been very successful. Both UCSF and DFCI have succeeded in building replica models of Jobie’s tumor both in vitro and in vivo (in immunocompromised mice). The next stage, for which we are raising funds, will allow us to continue the research into CDKN2 A/B cell cycle and to start testing a wide array of therapy combinations against the mouse tumors, using both existing cancer drugs and CRISPR gene editing to identify vulnerabilities in the cancer cells and mutation pathways. If successful, we will be in position to compete for the larger scale funding necessary to enter into a clinical trial.
The goal is clear: develop better treatments to both slow the pace of these cancer cells and ultimately kill them. Jobie got the best care possible. But the therapies available to kids with this disease are limited, toxic and not terribly effective. Very little research has been conducted on these types of cancer, but with the new gene editing and AI tools available, there is now real hope that better outcomes can be provided.
Jobie would love this effort – the effort to make things better for other kids going through the unimaginable. She never saw herself as a “victim” of this disease, she saw things through the eyes of the other, smaller kids, we encountered in pediatric cancer wards around the country. She would want their outcomes improved, she would want their families to have more hope, and she would want those kids to have access to treatments that didn’t make them so dreadfully sick.
That’s what we are doing. Andrea and Niko and I are not cancer researchers, but we know how to engage the best research teams in the world, we understand how to facilitate collaboration, and we know these goals are possible. We hope you will join us in this effort!
Jobie and our family have deep roots in MA, and doing this ride, while not in my athletic wheelhouse, is also a great way to honor her and mom Andrea Dukakis’ connections to the state.
I am riding to honor the memory of our beloved daughter Jobie and to continue the research project we established at Dana Farber in 2022 called the Jobie Project. The Jobie Project is an effort to develop therapies to treat, and ultimately, cure high grade pediatric gliomas in kids with NF1. Dana Farber is among the world’s leading research institutions and brings to bear a best in class capability for modelling complex tumors through CRISPR and other gene editing tools. For the Jobie Project, DFCI is focusing on why some low grade pediatric gliomas (the vast majority for kids with NF1) transform into aggressive and deadly high grade tumors. Our lead researchers believe one of the keys lies in the preponderance of alternations in the CDKN2 A/B genes in NF1 tumors. By isolating this CDKN2 A/B gene, they hope to learn how the other mutations function (Jobie, sadly, had five gene mutations) and hopefully isolate the ones that drive the tumor to the high grade status.
To date the Jobie Project has funded over $200,000 in research at Dana Farber, led by the lead investigators Mimi Bandopadhayay and Rameen Beroukhim. The Jobie Project has also funded another nearly $350,000 for coordinated and complimentary research at UCSF.
There is a great deal of interest in Jobie’s specific tumor – her’s was very rare and, with five mutations, very complex. But, cracking the code of what made her tumor so aggressive can unlock secrets applicable to a wide range of pediatric brain cancers. We are through Phase 1 of the Jobie Project, and it’s been very successful. Both UCSF and DFCI have succeeded in building replica models of Jobie’s tumor both in vitro and in vivo (in immunocompromised mice). The next stage, for which we are raising funds, will allow us to continue the research into CDKN2 A/B cell cycle and to start testing a wide array of therapy combinations against the mouse tumors, using both existing cancer drugs and CRISPR gene editing to identify vulnerabilities in the cancer cells and mutation pathways. If successful, we will be in position to compete for the larger scale funding necessary to enter into a clinical trial.
The goal is clear: develop better treatments to both slow the pace of these cancer cells and ultimately kill them. Jobie got the best care possible. But the therapies available to kids with this disease are limited, toxic and not terribly effective. Very little research has been conducted on these types of cancer, but with the new gene editing and AI tools available, there is now real hope that better outcomes can be provided.
Jobie would love this effort – the effort to make things better for other kids going through the unimaginable. She never saw herself as a “victim” of this disease, she saw things through the eyes of the other, smaller kids, we encountered in pediatric cancer wards around the country. She would want their outcomes improved, she would want their families to have more hope, and she would want those kids to have access to treatments that didn’t make them so dreadfully sick.
That’s what we are doing. Andrea and Niko and I are not cancer researchers, but we know how to engage the best research teams in the world, we understand how to facilitate collaboration, and we know these goals are possible. We hope you will join us in this effort!
Jobie and our family have deep roots in MA, and doing this ride, while not in my athletic wheelhouse, is also a great way to honor her and mom Andrea Dukakis’ connections to the state.
