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Musella Foundation`s Annual Giving Campaign


Al Musella's Comments: (This is his personal views and are not necessarily the views of the Musella Foundation!)

This is our #givingTuesday appeal!   The bottom line is that we have helped a lot of brain tumor patients directly - not only with our compassionate use program and copay assistance program, but by offering treatment suggestions, referrals to major centers and clinical trials, offering education via our online forums and our Brain Tumor Guide For The Newly Diagnosed, helped speed up approvals and funded a lot of quality research.  Our programs are critical to speeding up the search for the cure and to help patients deal with a diagnosis of brain tumor. We offer all of this at no cost to the patient, so we need YOUR help. We are only limited by funding. We have projects on the back burner just waiting for funding. We need $250,000 by the end of this year just to cover our compassionate use grant.   We have plans that require a few million dollars in funding, but every dollar helps and even small donations are appreciated.  Check to see if your employer has a matching grants program!


Posted on: 12/03/2019

Musella Foundation's Annual Giving Campaign

[Go to virtualtrials.con/donate to make a donation!] 

As 2019 comes to a close we would like to tell you what we have accomplished and ask for your help to enable us to continue and expand our services to the brain tumor community.

Research:

We gave out the largest and possibly most important grant in our history recently,

$1 million over 3 years. We paid $500,000 towards it so far and need to come up with another $250,000 by the end of this year for the project: Expanded access of Onc-201 for DIPG and High Grade Gliomas with the H3 K27M mutation.  We are tracking the outcomes in our new XCELSIOR registry,  This is an experimental drug that has shown remarkable results in early human trials against DIPG and H3K27M mutant GBMs, usually found in younger patients with midline glioblastomas.  This is the first treatment to offer real hope for DIPG and diffuse midline high grade gliomas.  We were the first to support the early development of this drug with two other grants, starting in 2014.  Our program directly treated over 73 patients and we have already seen a few amazing miraculous responses.   Our grant will allow many more patients to get compassionate access to this treatment and hopefully speed up the approval process so all patients with this mutation can benefit!  

We also funded these twelve other exciting brain tumor research projects this year, for a total of $583,000!  They are all important, exciting and may make huge impacts:

•             Blood based biomarkers and tissue genomics, transciptome and tumor mutational burden to assess correlation to responses seen to  Nivolumab in Recurrent GBM

•             Evaluate a novel quinoline analogue for DIPG therapy

•             Computer Modeling of Tumor Treating Fields

•             Targeting multiple immune checkpoints with a single checkpoint inhibitor: implications for immunotherapy against CNS cancer

•             Development of Novel Antibodies for Evaluating Dose-Response Relationship in a Phase I Trial of OS2966 in the Treatment of Recurrent High-Grade Glioma

•             Optimal therapeutic timing of locoregional B7-H3 CAR T cell immunotherapy and radiation for children with DIPG

•             ClinWiki Search Implementation

·        Exploiting the Vulnerability of Mutant IDH Gliomas

•             Provision of the most current population-based statistical information for all primary brain and other central nervous system (CNS) tumors in the United States via the CBTRUS Brain Tumor Registry

•             Heterogeneity of EGFRvIII-positive glioblastoma and their sensitivity to AZD9291 (Osimertinib)

•             MDM2 as a therapeutic target in PPM1D mutant Diffuse Intrinsic Pontine Glioma

•             Development of peptide-based tumor vaccine and lipid encapsulated nano-carmofur against acid ceramidase and Sphingosine-1- Phophate (S1P) Inhibition to improve glioblastoma standard of care

This brings the total number of research grants that we have awarded to 137, for a total of over $4.5 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.

 

Copayment Assistance Program

Just having new treatments available doesn’t help if patients cannot afford them.  We are helping patients get the treatments they need by awarding copayment assistance grants in the amount of up to $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 $6 million to over 1,200 brain tumor patients since we started a few 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.            

 

Publication:

 

Dr. Al Musella – our president – was an author on a paper titled: “Barriers to accrual and enrollment in brain tumor trials”, which was published in “Neuro-Oncology” – the most important brain tumor journal!

See https://academic.oup.com/neuro-oncology/article/21/9/1100/5513026

 

Advocacy:

 

We had many meetings with the FDA and Medicare this year, trying to speed up the process of drug approval, and get the insurances to pay for the treatments we already have.  We recently had a huge success – we were instrumental in helping to get Medicare to pay for Optune after 5 years of fighting Medicare on this issue and are making progress with the FDA on speeding up approvals!

 

 We are collaborating with Cancer Commons and xCures to take our virtual trial project (now called XCELSIOR) to the next level. The project is in testing now and we will announce details soon.  It involves a new free 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.

 

About Donations:

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 or to help others pay for treatments.  So when donating online at virtualtrials.com/donate, 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.  If you donate via Facebook, it will go to “Unrestricted”.

 




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