Musella Foundation 2018 Highlights
Al Musella's Comments: (This is his personal views and are not necessarily the views of the Musella Foundation!)
As the year comes to a close, we reflect back on what was accomplished. This was a really exciting year for brain tumors. We feel that we are on the cusp of a major breakthrough. Everything is coming together - many clinical trials are reporting long term survivors in a small % of patients. Our goal is to speed up the approvals for these treatments so doctors can combine them in cocktails and get long term survivors for most brain tumor patients!
Posted on: 11/20/2018
Musella Foundation For Brain Tumor Research & Information, Inc
We gave out the largest and possibly most important grant in our history recently:
$1 million (over 4 years – we paid $250,000 towards it in 2018) for the project: Onc-201 for DIPG and High Grade Gliomas with the H3 K27M mutation! This was in collaboration with the Cure Starts Now and the Michael Mosier Defeat DIPG Foundation! This is a new drug that has shown promising results in early human trials against DIPG and GBMs which have this mutation, usually found in younger patients with midline glioblastomas. Our grant will allow many more patients to get access to clinical programs with the experimental treatment now and hopefully speed up the approval process so all patients with this mutation can benefit! This is the first treatment to offer real hope for DIPG and midline high grade gliomas. We were the first to support the early development of this drug with two other grants, starting in 2014.
We also funded these 14 other exciting brain tumor research projects so far this year, for a total of $563,195. They are all important, exciting and may make huge impacts:
- A new approach to treating DIPG by re-programming chromatin
- Oncolytic Poliovirus Immunotherapy for Pediatric Medulloblastoma and ATRT
- Resistance to trametinib and dabrafenib in BRAF-V600E mutated gliomas
- Elucidating a novel invasion mechanism present in glioma stem cells
- ICA-1 treatment for Glioblastoma and Medulloblastoma
- Iodine nanoparticle to enhanced radiation therapy for Gliobmastoma
- Targeting ribonucleotide reductase for the treatment of Glioblastoma
- Targeting the actin polymerization pathway for improved treatment of GBM
- PAC-1 combined with TAK228 to treat DIPG
- EGFRvIII-positive glioblastoma and their sensitivity to Osimertinib
- SGI-110 combined with peptide vaccine immunotherapy for DIPG patients
- Exploiting the Vulnerability of Mutant IDH Gliomas
- CBTRUS Brain Tumor Registry
- A grant to the DIPG Collaborative to help fund DIPG research.
This bring the total number of research grants that we have awarded to 121, for a total of $3.95 million, since we started giving grants in 2003. Many of these projects are coming to fruition now and are among the most promising treatments in the pipeline. We helped fund 3 out of 6 of the most promising treatments presented at SNO this year!
Copayment Assistance Program
Just having new treatments available doesn’t help if patients cannot afford them. We are working on fixing the system (see the advocacy section), but until then – we are also helping patients get the treatments they need by awarding grants in the amount of $5,000 per patient per year. The idea being we can help the patients reach their out of pocket maximums so their insurance covers the cost of the rest of their treatments. We have already awarded over $4.7 million to over 940 brain tumor patients since we started 6 years ago. We receive many letters from the recipients and their families telling us how much this has helped them. We are the only brain tumor organization that is allowed (by the US Attorney General) to offer this type of assistance to Medicare patients. See BrainTumorCopays.org for details.
Advocacy and Collaboration:
We formed 3 new collaborations this year in addition to the many collaborations we continue to participate in. Collaboration is the key to multiplying the strength and power of each organization, to reach our goals faster!
1. We are collaborating with Cancer Commons to take our virtual trial project to the next level. We will announce details soon but it involves a new service where we have experts give treatment options, help patients get those treatments, record and analyze the results, help drugs get approved, change the clinical trial system, and drastically cut down the time and cost to develop a drug. It will speed up the search for the cure.
2. We already mentioned the new collaboration with the Cure Starts Now and the Michael Mosier Defeat DIPG Foundation to fund the large project mentioned above.
3. We joined, and act as the treasurer, of the DIPG-All-In-Initiative. This takes a different approach to finding new treatments.
We had many interactions with the FDA, Medicare and other insurance companies, as well as many brain tumor organizations, trying to speed up the process of drug approval, and get the insurances to pay for the treatments we already have.
Medical Advisory Board News:
We have 4 new medical advisory board members this year: Dr. Nicholas A. Blondin, Dr. John A. Boockvar, Dr. Isabelle M Germano, and Dr. Katherine E. Warren. Our medical advisory board members are chosen because they are among the best and brightest in their field.
We understand that some people want all of their donation to go only to research and don’t want to pay for salaries, overhead, educational programs and materials and to help others pay for treatments. Others, mostly families that used the program, only want to give to the copayment assistance program. So when donating online or with the attached donation form, we allow you to select what your donation will be used for. If you select “Research Only”, 100% of your donation will go to research. If you select “Co-pay program”, then 91% of your donation will go to patients who need help, and 9% goes to the cost of running the program. If you select “Unrestricted”, you give us the most flexibility to use the money where it is most needed.
To make a tax deductible contribution, go to virtualtrials.com and click “Donations” on the menu at the top!
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