There is no cause greater than the fight for our Children’s right to grow up to be adults.
Storm the Heavens has been working to bring a cure to DIPG since Philomena’s diagnosis in 2016. Never have we been as inspired by the success of a trial as we are with the Stanford University Car T Cell trial. In the first five patients treated beginning in 2020, all experienced a reduction of symptoms and/or tumor shrinkage. We are teaming with donors and foundations to fund a nurse practitioner position that will collect research from patients and provide the direct link from bedside to bench. The position must be filled to expand the trial for more patients now. By doing so we give more kids the chance at life and better quality of life. We also speed the needed research to continue to improve the trial to bring a cure. “There is simply nothing available other than this Car T Cell trial after initial radiation that is reducing a tumor-like mine by 50% in some areas and 25% overall without any of the tumor growing back for 3+ months now. I have regained the ability to talk clearly, the feeling in my face and limbs, and my walk is better. To know other kids could have this chance NOW if we fund this position means everything to me. If you could see how hard this team of doctors and nurses is working. The way they literally are running from clinic to our hospital bed to collect all the blood, cyst fluid, and CSF fluid they can to learn quickly you would understand this need. With every dose, I’m telling them what would be too much for a younger child or what is very tolerable. They are crafting solutions with every dose for a better result. It is the right team and they just need to have funding to expand.” Jace Ward, currently patient 1 at Stanford. Hear from Jace himself, here: https://vimeo.com/542804826/c61c515fd6
Storm the Heavens is raising $250,000 to fund the Nurse Practitioner position this year. We plan to commit for two years. To do so we need your help now. With every patient, the team is learning more and more to optimize the success. An average of 350 kids die from DIPG every year. We must do better. We must fund trials that show promise now. We welcome your donation. If you are a business or foundation that would like to partner, we welcome the shared effort as well and would be honored to add your logo as well to this effort. There is no cause greater than the fight for our children’s right to grow up to be adults.
You can make a donation here:
In 2020, Storm the Heavens Fund donated $10,000 to Oncoceutics, a clinical-stage drug discovery and development company. The donation was to assist in funding an Expanded Access program for ONC201 in the United States. ONC201 is an investigational medicine that is being evaluated in Phase I and Phase II trials.
The program will allow Oncoceutics to work with physicians practicing in the United States to provide ONC201 to patients with H3 K27M-mutant glioma, including DIPG, who meet certain eligibility criteria and who cannot otherwise access ONC201 by participating in an ongoing clinical trial. The Expanded Access program has been made available to select hospitals across the United States,